When I sit back and reflect on Sam's journey thus far, there's a lot of places my mind could wander. I could think of the multitude of nights spent at PCMC. Or the 3 weeks at St. Mark's. I could pinpoint the day Sam came home from the hospital (well, or 1 of the 3 to choose from). And we've been to Dr. Day's office so much, we pretty much have residency there. Yet, in an ironic twist (5 is my lucky number, I'm on Chapter 5 of his story), Sam's story thus far consists of 5 days. 5 moments. 5 experiences that have changed me, my wife, my family, and especially my outlook on life. 5 days to share with you, before we talk about the next important date in our lives.
Day One: September 12, 2013
I know what you're thinking. Why not Sam's birthday? That was a special day to be sure (I'll never look at 9/11 the same way), but that was not a day that I attribute to Sam's story and our journey. You see, for a brief 18 hours, we thought Sam was fine. Another normal baby to join Lukas and Miles. We were adjusting to the realities of 3 boys (we hadn't found out the sex until Sam graced us with his presence. In many ways, we were clueless to what was about to happen. No, that was a happy day. One filled with tremendous pride every time I looked at my wife. Natural childbirth is nothing to sneeze at, and Elisa was absolute perfection that day.
No, the first day and moment that really reminds me of Sam's journey is the next one. I won't get into all of the details of each of these days...after all, I've probably written hundreds of pages of blogs since September 12th, but we'll cover the basics and why the day matters to this story, and this bit of reflection. The world changed the morning of September 12th. At about 4 in the morning, Elisa commented that Sam was lethargic and she was worried about his hands and feet looking blue. Upon telling a nurse, Sam was whisked out of our room for observation. Before we knew it, we were down in the NICU, staring at our child as they put in IVs, cords, and oxygen. Early on, our pediatrician threw around theories like "aortic stenosis". Little did we know that Sam's issue was much bigger than that...nothing that could simply be fixed with a little surgery. Sam's journey began that day. We knew Sam was sick, although we had no idea just how sick he was. But the day after his birth will always be meaningful to me. It was the day we realized that Sam needed us. Needed you. We all did.
On this day, Sam taught me that needing some help, some support....wasn't a bad thing. It was a necessity to get through the day. On this day, Sam taught me reliance.
Day Two: September 30, 2013
I often wonder, after this experience, what stories people would share if I asked "what was your scariest day?" Before September 30th, I might have struggled if I was asked that question. I would have probably had a pathetically shallow response, like the day I rode my first roller coaster. Until this day took place. After 21 days (and over 100 vists to St. Mark's NICU), Sam had been released on a Saturday. He had only been released because I had stretched the truth about having consulted with Dr. Day. So we spent 2+ days at home, thinking that a quick trip to the Cardiologist would just mean some Viagra for Sam, followed by a return trip home. This day was anything but simple. It was scary.
It started by finding out that Sam's heart pressures were now higher than they had been at St. Mark's. Next, Dr. Day ushered us into the CICU. That was followed by an ultrasound. And then our world ended, so we thought. This was the moment that Dr. Day became Dr. Doom. He believed that he knew where the AVM was, before the MRI had been completed. He told us that it was likely that Sam would not survive. Up to that point, I knew Sam was sick but I didn't ever think Sam could be lost. I remember the nurse crying while she watched us cry. Dr. Doom saying how sorry he was. And then I remember laying with Elisa in the Ronald McDonald room, not able to sleep. We talked about trying to take care of Sam while he was here. You could tell we were grappling with thoughts that no parent should ever have to grapple with. It was the longest night. By the time we headed into the MRI, I had lost hope that there was hope. I'll never forget that day.
Because on this day, Sam taught me what loss might feel like, as a parent. He opened my eyes to the connection we had forged in just 3 short weeks. On this day, Sam taught me to hold on.
Day Three: December 10, 2013
For those of you that have been with us through it all, you know that the AVM ended up being a fistula, and that it wasn't where Dr. Doom expected it to be. We spent the rest of the week getting Sam's pressures down (thanks to the Viagra/Sildenafil), and then were able to take him home. We went into a routine after that...2.5 months of a very cranky Sam, and very tired parents. We watched every ounce that he gained (or didn't). We watched his pulse oximeter for any signs of trouble. And I adjusted to a life that involved medicines, oxygen, and fear. Every day, I was afraid that Sam would relapse, struggle, or worse. Every day it felt as though I couldn't breathe.
December 8th, Elisa took Sam (at 1am) to PCMC, and we found out that he was in heart failure. But that's not necessarily the day I remember as being monumental in his journey. It was more troubling to me that Sam went into PCMC on the anniversary of my dear brother's death, to be frank. No, the third quintessential day in Sam's journey was two days later. That was the hardest day of the journey. The day before, we had listened as the doctors stated an emergency embolization would take place. We heard about the dangers - stroke, loss of limb, brain damage, death. And the next day, we had to wheel little Sam through PCMC, across a connecting bridge, and through University Hospital. The hardest moment of the hardest day was saying so long to our little man as he went back for his procedure. I cried harder than I remember crying in adulthood. I remember the sense of exhaustion, of helplessness. I remember watching every clock slowly crawl by. I had sat with a perfect view of the hallway leading to where Sam was, anxious to see Dr. Tosky.
If it was the hardest day, it was also the turning point. Tosky completed a medical miracle. Sam was okay, and they had occluded 40-50% of the flow. They hoped that Sam would come out of heart failure, or at least survive for a couple months until another procedure could be completed.
On this day, Sam taught me to believe that even in the darkest moment, there was still a belief that things were going to be okay. And that we should lean on his instinctual strength when we don't feel out hearts and minds can handle was was put onto us. On this day, Sam taught me hope.
Day Four: January 28, 2014
Again, Sam showed that he was the strongest member of the family. Just three days after his embolization, he was released (directly from the NICU). We were home for Christmas and started to see a very different Sam. He was happy. He started growing. He wasn't in heart failure. We had more hope than we could have ever had, just 2 months before. Things were looking up...so much more optimism was flowing through out household - what could a simple and worthless trip to the Geneticist do to that?
Plenty...at least, personally. We walked into that office thinking that we'd strike one more thing off the list of "what could have caused Sam's fistula" and take one more step closer to "it was a one in a million kind of thing". We left, realizing that Sam was one in a million, but the cause wasn't a fluke. The cause was due to me. My blood. My genes. I had passed this onto Sam.
We learned that Sam (and I) had a rare genetic condition called CM-AVM. In it's most mild form, it caused you to have small red birth marks on your body. In it's most severe...Sam's case...it could bring with it a fistula in the brain. And Sam's was big enough to cause heart failure. It was (and still is) a weird sensation, standing in the examination room with my shirt off, as the reality of our joined condition washed over me. Harmless birth marks that I had always thought were just unique pieces of me ended up putting Sam into heart failure. I had to go through such a process in the days and weeks to follow. First, there was my MRI and finding out that I didn't have a fistula or AVM in my brain. Next came the guilt, avoidance, denial, anger, sadness, and, at last, acceptance that this unseen connection between us was here to stay, and at least something that we could manage.
On this day, Sam taught me about unseen connections and unknown results. Up to this point, I thought the world had just thrown us a curveball. Suddenly, I looked in the mirror and saw a condition that had caused Sam's whole story to be written. And I finally became okay with it. On this day, Sam taught me acceptance.
Day Five: May 8, 2014
The first five days that really stand out to me in Sam's story were wrought with pain, fear, worry, and sadness. Yes, there were moments of happiness. Seeing Sam and knowing that he'd made it through his embolization was wonderful. But the days were jarring in the overall story - moments that rocked us to the core and didn't let go. Moments that have given me nightmares...in equal part to sleepless nights.
But Day Five (my lucky number, remember?) started to change that...with a twist. After wrapping our heads around Sam's genetic condition (and hope for a normal life if we could get past the fistula), we got through cold season, got Sam his MRI, and found out from his Neurology team that Sam was holding well enough that no intervention was required for the near future. In fact, if Sam continued to hold his own, another intervention might not be needed. We also found that Sam's echo results were more positive, he came out of the MRI like a champ, and we were to start treating this little angel like "the normal baby that he is". Yes, I'll remember this day for all of those reasons. But it's one of the biggies for another one...
When Dr. Brockmeyer explained just how remarkable the result of Sam's embolization was, my core was rocked again. Back in December, I thought they were giving us a list of "worst case scenarios" just in case. I found out that they weren't worst case scenarios. One of those was an expected scenario...they just weren't sure which one it would be. Dr. Tosky, who does these embolizations almost solely on adults, had navigated Sam's arteries and vessels that were small...millimeter small. All the way from his groin into his brain, occluding a major feeder that was forcing 50% of the bloodflow that was overloading Sam's heart. Sam's result from Dr. Tosky was a medical miracle. The fact that we were talking about a lack of intervention was unexpected. By everyone. Especially the doctors.
On this day, Sam taught me that this entire journey could be best illustrated by our entire family walking on a millimeter wide tightrope...one that we were really unaware of. We balanced our marriage, children, self confidence, health, and sanity every single day, and Sam's story could have been decidedly different just months before. I finally started to realize just how serious this journey had been, and how lucky we were to be still in it. On this day, Sam taught me acceptance
Day Six?
5 days. 9 months. And a roller coaster that I never expected as Sam graced us with his presence on September 11, 2013. I've learned so much...about the strength of my children, my parents, my family, my wife, and myself. I have realized that the human spirit can handle so much more than you really think, yet only because you have no other choice but to handle it. And I understood that this journey is not yet done, but is definitely on the upward slope.
But, outside of all of that, I realized something else. Elisa did too. We couldn't have walked that figurative tightrope without all of you. You're probably thinking "well, I didn't do anything, right?" You're wrong. If you're reading this blog, you already did something. So many of you cared, sent "Likes", comments, words of encouragement, and love. When I tweeted during Sam's embolization, 50 people went onto Twitter (some of them, for the first time) to follow the story. Some of you came to St. Mark's to see Sam or to see us. Some visited us at home. Many visited at PCMC. Some of you left food on our porch. We received coffees on multiple days, and visits when we needed it the most (even on embolization day). We got muffins, food, drinks, and hugs. We felt your love and concern in every step of Sam's journey, and we really couldn't have survived it without that support. It's quite amazing that when you're in some of your weakest moments, small things can keep you going. And "acquaintances" become friends.
In every day of these last 9+ months, we've all had something that you haven't. We've had Sam. Sure, you've had stories, blogs, and pictures, but you haven't had him. We've been the fortunate ones. We've gotten the lessons. We've been taught by an infant. It's your turn.
On July 19, 2014, it's our turn, as a family, to give back to you and to thank you for everything you did (from liking a post to making us dinner to sitting with us during Sam's surgery) and how you helped us survive the hardest time in our lives thus far. And Sam has some lessons to teach you, too.
We will send a formal invitation out soon, but please "save the date" for July 19th. We will open our home and want you to come to something we've dubbed a "Samuelabration". We're going to celebrate Sam, his progress, and the love that he's received from all of you. This isn't one of those "oh yeah, come if you can" kind of invitations. We want you to come. We truly hope that you will make one more ounce of time to come together and let us say thank you for the support. More details are to come, but we're so excited that this day is fast approaching.
Because on this day, Sam will teach you to believe in the power and strength of the smallest among us. He'll let you see how much you saved our lives as we have been attempting to Save Sam's. On this day, Sam will teach you that you're appreciated. Loved. And that we would have been lost without all of you.
You'll see...
Day Six: Saturday, July 19, 2014
Monday, June 23, 2014
Monday, June 16, 2014
Saving Sam (Chapter 5.10): The new normal
It's funny what kinds of things make you feel "normal". It's not the big stuff, but the smaller things that put you at ease...and tell you the next few minutes, hours, days, weeks, or years might be okay. For some, it's putting on pajamas. After a day of work, you get home, lose the stuffy clothes to impress, and jump into the most comfortable clothes you have. For others, it's coming back to your house after traveling and climbing into your own bed. For Elisa, normal probably involves a Grande Non-fat Mocha with half the syrup. From anywhere. No, really. So after the festivities at the Neurology office, and the fantastic news from Dr. Tosky and Dr. Brockmeyer, I settled into the idea that our life wouldn't involve trips to PCMC until September (for Cardiology) and November (Sam's next MRI). Yet, the idea of not having a doctor's appointment isn't exactly normal. And since Sam had come into the world, the idea of normal was really lost. Nothing felt normal. Even snuggling with the little man invited worries of retractions and oxygen. Every cry could have been more. Every beep on the (let's face it, abnormal) pulse oximeter gave us pause. So what was normal going to look like after we had arrived at a point in Sam's journey where there was no pending "medical intervention"? I was surprised at how it manifested itself.
I can't speak for Elisa. Her normal is probably more meaningful and personal, but mine was all about planning. Trip planning. You see, I'm OCD. You can go back in the blog (September 2012) and read about 10 blogs about our trip to Florida and how I had plotted every detail. So when we found out that Sam was going to be okay, at least for the time being, I started writing down some ideas. Those ideas turned into a spreadsheet. That spreadsheet evolved into tentative vacation plans for 2014-2018. That's right. If I have my way, I know where we will be going for the next 5 years. That felt normal. Travel felt impossible with a sick kid, especially one that had scared us with heart failure and a miracle embolization. Now, the concept that we could all get on a plane and travel as a family felt like the most normal thing in the world. Since that day in May, I haven't stopped planning. It's like I can't get enough of this normal. Sure, it's not perfect. We know that Sam's fistula is still there, and he still has retractions. But it's the closest thing to normal we've had since before 9/11/13. I'd take it. Then again, being "normal" meant a few more things had to happen in relation to our little Sam. The safety nets, as it were, had to be severed.
And when we talk about safety nets, there were three that needed to be addressed. First, we needed to get Sam off of oxygen again at night. After the fun (okay, maybe not so much) of having the pulse oximeter beep through the night the first time, we weren't looking forward to it. Second, we had to deal with the PDA that was still in Sam's heart. While we weren't doing an embolization, a procedure to close that could still be on the horizon - we needed to find out the plans for that and act accordingly. And third, we needed to start addressing the idea of Sam's medications. No embolization? As much as I'm sure Sam was enjoying the viagra, we didn't want him on the stuff if we weren't intervening.
And so, we began. Literally, the night of the Neurology appointment (hey, we didn't waste any time in embracing the new normal!). And we figured we would just deal with each of these, one at a time. Oxygen was first up, and to be honest, it was us more than Sam that had been holding onto the nightly comfort. Sure, it had probably taken some pressure off of him during his bouts with colds, but I think it was more that we liked to not have a beeping pulse oximeter that was keeping us up when Sam was getting precious minutes of sleep during the middle of the night. But we had gotten him off oxygen once before, and we knew (or hoped) that we could do it again. We were also blessed with a fortunate byproduct of the MRI - a lack of congestion/gargle in Sam's nose and/or lungs. We noticed it after we took him home on MRI day. We figure that the industrial strength suckage equipment at the hospital did what our ineffective bulb syringe could not - get the deep stuff out. So, without a gargle and with a happy baby that had just received fantastic news from his Neurology team, it was time to pull the oxygen again. No time like that day, right?
I wish I could say that he came off the oxygen and his saturations didn't dip. That we just all slept a bit better and the oxygen tank just sat in the corner. Don't get me wrong. Sam was taken off of the oxygen that night, but we returned to the game that we had played just weeks before. Sam would start with saturations of 96-98, and by the time he went to sleep, he'd dip down into the 88-92 range. And then you'd hear the beeps. He'd level out. And then you'd hear the beeps. It wasn't nearly as bad as the first time we had tried to wean him off of the oxygen, but it was nerve-wracking all the same. In many ways, it was a bit more worrisome than before. You'd think that a 6-month "clean bill of health" would make you worry less, but it heightened the fear every time the pulse oximeter would go off. Thoughts like "I thought he was supposed to be okay" would race through your head, whereas when he was sick, you'd just worry that it meant something worse than the baseline you had struggled to accept over months. But we were resolved.
The thing is, after a couple hours of beeping and saturation dips, Sam recovered for good. I drifted off into an uneasy sleep, and woke with a start. How late was it? Was Sam okay? My heart raced as I grabbed my phone - 1:52 AM. No beeping. No noises. I grabbed the monitor. There was Sam, sleeping soundly. I switched the view to the pulse oximeter. 95. Heartbeat in acceptable levels. At that moment, I felt like I was getting Sam's confirmation that things were on the right trajectory. I went back to sleep, waking about every hour to see his saturations. Amazingly, I saw moments of 95, 96, and even 97 while he was in a deep sleep. I was absolutely encouraged by his progress. The next morning, as Sam woke up, his saturations increased as well. 98-99-100. Sam was off oxygen completely...exactly one night after Sam's marathon MRI and Neurology appointments.
To this day (over a month later), Sam hasn't come close to the oxygen. No need. His sleeping gradually improved as the oxygen became more of a distant memory. At the worse, he has been sleeping from 8:00pm - 5:00am. Some mornings, he has made it to 6:00am. On the rare occasion, he's slept until 6:30am. Like his two brothers before him, Sam has the annoying habit of being an early riser (I listen to parents that say their kids sleep until 9 and I'm instantly jealous...Lukas routinely is up at 6:00am on the weekends, and Miles' idea of sleeping in is 7:30am.). But it's nearly a full night's sleep. And his better sleep seemed to be immediately related to a lack of oxygen. No, I'm not suggesting the oxygen was hurting him. But I wonder if the cannula and the ever flowing oxygen (as air) was annoying enough to wake Sam up. But, regardless, step one was complete. Sam was off oxygen and hasn't looked back once.
Which took us to item #2. The PDA. This has been an interesting journey with Dr. Doom (and even before). In the very first echocardiogram at Sr. Mark's Hospital, we were told that Sam had a small hole in his heart. Just days later, the St. Mark's tech with the third echocardiogram told us come great news...Sam's PDA had closed. We were relieved. One thing to check off the list, right? Of course, that conception was dashed when we met Dr. Doom. The PDA was still there. Small? Yes. But present, and putting pressure on his heart. The chief concern, at that point, was the fistula and I remember being surprised to learn that the PDA actually helped Dr. Doom understand the pressure Sam's heart was under (it gave them a new way to read the differences between pressures in his heart and aorta). Next came the heart failure, the recovery, and our January Cardiology appointment where Dr. Doom first introduced the idea of fixing the PDA altogether (by catheter or surgical incision between the ribs). For awhile, we expected this to be the definitive next step on the heart side of Sam's journey. But then, after the MRI, Dr. Doomy indicated that they might go fix it or they might wait. It all depended on what the Neurology team said.
So here we were, with a clear next 6 months from Neurology. We expected that Sam would be having a procedure this summer...just not the initial one we had planned on. This was reinforced when Dr. Doom had told us that he felt the PDA was putting more pressure on Sam's heart than the fistula was now. It sure sounded like an intervention was in order. So I placed a call into Dr. Doom and his nurse Linda. I expected to hear that we would have to go back into Cardiology and schedule his next surgical procedure. A day later, Elisa got a call back from Linda. The news, as is par for the course at this point, was unexpected.
Linda was completely supportive of Sam's improvement, as was Dr. Day/Doom. In fact, Dr. Doom was comfortable enough to treat Sam like any other patient that "only" had a PDA. Dr. Doom wanted to wait until Sam was 3 years old. That's right. No Neurology consult for 6 months. And a potential 2+ year delay on any heart intervention. Linda pressed forward. Sam was recovering. His last echocardiogram still showed an enlarged heart, but progress had definitely been made. So what were the next steps? How were we supposed to act? As if Sam had been okay the whole time, apparently. Linda's direct quote was "treat him like the normal baby that he is". A normal baby? What was that? The idea felt foreign to me. How do you treat a fragile child as if he wasn't so fragile? Through a return call by me to Linda, I started to understand what it meant.
Quickly, I realized that this bit of advice had less to do with Sam and more to do with Elisa and me. First, we were told to get Sam off of the pulse oximeter. Apparently, living like a hawk, circling those numbers every night, was not helpful to us or to Sam. He was getting better, and our incessant worries about his numbers was just going to force us to "hold on" to some of Sam's interventions for our own sanity and sense of calm. So the pulse oximeter would have to be turned off. I silently pondered how long it would be until we could sever that security blanket. Second, we needed to get out and stop living around Sam's "condition". To be fair, we already knew this part and since he had come of oxygen (during the day) in January, we'd started venturing out of the house. That seemed to be one we could tackle. And the third? Well, it had to do with out third goal anyway. Sam's medications.
With the newfound confidence in Sam's condition, at least for the near future, I pushed a bit harder on what Dr. Doom's medication plan was. Since Sam had come home, we had become used to Sildenafil three times a day, Zantac twice a day, and added Lasiks twice a day, which was added to our daily routine after Sam's heart failure. After our January appointment, we had moved Sam down to Lasiks once a day, but the medications still seemed to be a little dissonant with Sam's immediate prognosis. So we started with the Sildenafil, knowing that the Zantac would last as long as the Viagra did. This was a bit of a mixed bag, in terms of Linda's answers. No, we couldn't just get Sam off of the Sildenafil. But, unbeknownst to us, Dr. Doom had already been working on getting Sam off of the Sildenafil. Before Sam's heart failure, we moved from 1.6 ml to 2.0 ml, based on Sam's growth and larger size. I never realized that for the next 5 months, Dr. Doom didn't increase Sam's dosage. So while we were continuing to give him his medications, he was actually getting less and less of it (per his size) with every ounce that he was gaining. He would grow out of it, per Linda. And then they would take him off of the Sildenafil. Knowing that this was good, but not immediate enough, I turned my attention to the Lasiks. Could we get him off of that, at least?
Linda ended up consulting with Dr. Doom on this, but the response was cautiously optimistic. They didn't want to rush Sam off of the diuretic, but they were willing to start the process, albeit with baby steps. We'd move to Sam having Lasiks 2 out of every 3 days. That meant that Sam would actually have 2-3 days per week without one of his medications! Joined with the great sign that Dr. Doom hadn't increased Sam's Sildenafil for months, we felt we could cross #3 off the list. That just left pesky #2. And that blessed pulse oximeter.
I thought it would take weeks, if not months, to sever the ties to that machine. For all of the pain and worry the pulse oximeter had brought, it was still so comforting to see good statistics when Sam was out of our sight and room, in the middle of the night. It had been critical as we took him off of oxygen, simply to know that he was still okay. And when a nightmare took hold (and Elisa and I have had plenty in nine months), we could see the numbers and know that it was all a bad dream. It had been the last indicator that Sam needed to go to PCMC (when heart failure had begun to take hold). It was the first thing I checked in the morning and the last thing before I'd allow myself to fall into an uneasy sleep. How could we let go of that? The answer was simple. We had to. For Sam, and for our own longterm insanity.
We took one more night with the pulse oximeter on, and then we pulled it off. It officially went away in early May, and although we talked a few times about putting Sam back on it, just to see how he was doing, that idea never came to full fruition. The first night, I'd wake up every hour and stare at the little monitor. Without numbers, I'd focus intently on the small image of Sam, hoping I'd see him move or take a breath. The next night, it was easier. And the next. And the next. Now a full month removed from the pulse oximeter really being a part of our life, I still check the monitor 2-3 times per night but it more out of habit than out of fear. We were, as best we could, starting to treat Sam like "the normal baby that he was".
So here we are. Sitting in the middle of June, with Sam slowly coming off of Lasiks, off of oxygen completely, and unplugged from the pulse oximeter for over a month. We're trying to see (and are starting to succeed) Sam as a normal baby. He's still our miracle. He's still our porcelain doll. But he's also showing signs of being that normal baby that we were told we have. It was time to embrace that and start enjoying every second of this wonder boy in our lives. Because at multiple times in his first 3 months, we didn't think we would have him with us. The idea of a 9 month old Sam seemed foreign. Now, we're hurtling toward a 1 year birthday with daylight in front of us...stretching as far as the eye can see.
While we're current with Sam's journey now, we're not current with the blog. We have one more to go until I can officially say I'm caught up. After this momentous news, Elisa and I are starting to really appreciate what the journey has entailed, and how many people were there for us when they didn't have to be. It's about time to celebrate Sam, rather than worry about him. It's about time to celebrate you too.
Until next time...
I can't speak for Elisa. Her normal is probably more meaningful and personal, but mine was all about planning. Trip planning. You see, I'm OCD. You can go back in the blog (September 2012) and read about 10 blogs about our trip to Florida and how I had plotted every detail. So when we found out that Sam was going to be okay, at least for the time being, I started writing down some ideas. Those ideas turned into a spreadsheet. That spreadsheet evolved into tentative vacation plans for 2014-2018. That's right. If I have my way, I know where we will be going for the next 5 years. That felt normal. Travel felt impossible with a sick kid, especially one that had scared us with heart failure and a miracle embolization. Now, the concept that we could all get on a plane and travel as a family felt like the most normal thing in the world. Since that day in May, I haven't stopped planning. It's like I can't get enough of this normal. Sure, it's not perfect. We know that Sam's fistula is still there, and he still has retractions. But it's the closest thing to normal we've had since before 9/11/13. I'd take it. Then again, being "normal" meant a few more things had to happen in relation to our little Sam. The safety nets, as it were, had to be severed.
And when we talk about safety nets, there were three that needed to be addressed. First, we needed to get Sam off of oxygen again at night. After the fun (okay, maybe not so much) of having the pulse oximeter beep through the night the first time, we weren't looking forward to it. Second, we had to deal with the PDA that was still in Sam's heart. While we weren't doing an embolization, a procedure to close that could still be on the horizon - we needed to find out the plans for that and act accordingly. And third, we needed to start addressing the idea of Sam's medications. No embolization? As much as I'm sure Sam was enjoying the viagra, we didn't want him on the stuff if we weren't intervening.
And so, we began. Literally, the night of the Neurology appointment (hey, we didn't waste any time in embracing the new normal!). And we figured we would just deal with each of these, one at a time. Oxygen was first up, and to be honest, it was us more than Sam that had been holding onto the nightly comfort. Sure, it had probably taken some pressure off of him during his bouts with colds, but I think it was more that we liked to not have a beeping pulse oximeter that was keeping us up when Sam was getting precious minutes of sleep during the middle of the night. But we had gotten him off oxygen once before, and we knew (or hoped) that we could do it again. We were also blessed with a fortunate byproduct of the MRI - a lack of congestion/gargle in Sam's nose and/or lungs. We noticed it after we took him home on MRI day. We figure that the industrial strength suckage equipment at the hospital did what our ineffective bulb syringe could not - get the deep stuff out. So, without a gargle and with a happy baby that had just received fantastic news from his Neurology team, it was time to pull the oxygen again. No time like that day, right?
I wish I could say that he came off the oxygen and his saturations didn't dip. That we just all slept a bit better and the oxygen tank just sat in the corner. Don't get me wrong. Sam was taken off of the oxygen that night, but we returned to the game that we had played just weeks before. Sam would start with saturations of 96-98, and by the time he went to sleep, he'd dip down into the 88-92 range. And then you'd hear the beeps. He'd level out. And then you'd hear the beeps. It wasn't nearly as bad as the first time we had tried to wean him off of the oxygen, but it was nerve-wracking all the same. In many ways, it was a bit more worrisome than before. You'd think that a 6-month "clean bill of health" would make you worry less, but it heightened the fear every time the pulse oximeter would go off. Thoughts like "I thought he was supposed to be okay" would race through your head, whereas when he was sick, you'd just worry that it meant something worse than the baseline you had struggled to accept over months. But we were resolved.
The thing is, after a couple hours of beeping and saturation dips, Sam recovered for good. I drifted off into an uneasy sleep, and woke with a start. How late was it? Was Sam okay? My heart raced as I grabbed my phone - 1:52 AM. No beeping. No noises. I grabbed the monitor. There was Sam, sleeping soundly. I switched the view to the pulse oximeter. 95. Heartbeat in acceptable levels. At that moment, I felt like I was getting Sam's confirmation that things were on the right trajectory. I went back to sleep, waking about every hour to see his saturations. Amazingly, I saw moments of 95, 96, and even 97 while he was in a deep sleep. I was absolutely encouraged by his progress. The next morning, as Sam woke up, his saturations increased as well. 98-99-100. Sam was off oxygen completely...exactly one night after Sam's marathon MRI and Neurology appointments.
To this day (over a month later), Sam hasn't come close to the oxygen. No need. His sleeping gradually improved as the oxygen became more of a distant memory. At the worse, he has been sleeping from 8:00pm - 5:00am. Some mornings, he has made it to 6:00am. On the rare occasion, he's slept until 6:30am. Like his two brothers before him, Sam has the annoying habit of being an early riser (I listen to parents that say their kids sleep until 9 and I'm instantly jealous...Lukas routinely is up at 6:00am on the weekends, and Miles' idea of sleeping in is 7:30am.). But it's nearly a full night's sleep. And his better sleep seemed to be immediately related to a lack of oxygen. No, I'm not suggesting the oxygen was hurting him. But I wonder if the cannula and the ever flowing oxygen (as air) was annoying enough to wake Sam up. But, regardless, step one was complete. Sam was off oxygen and hasn't looked back once.
Which took us to item #2. The PDA. This has been an interesting journey with Dr. Doom (and even before). In the very first echocardiogram at Sr. Mark's Hospital, we were told that Sam had a small hole in his heart. Just days later, the St. Mark's tech with the third echocardiogram told us come great news...Sam's PDA had closed. We were relieved. One thing to check off the list, right? Of course, that conception was dashed when we met Dr. Doom. The PDA was still there. Small? Yes. But present, and putting pressure on his heart. The chief concern, at that point, was the fistula and I remember being surprised to learn that the PDA actually helped Dr. Doom understand the pressure Sam's heart was under (it gave them a new way to read the differences between pressures in his heart and aorta). Next came the heart failure, the recovery, and our January Cardiology appointment where Dr. Doom first introduced the idea of fixing the PDA altogether (by catheter or surgical incision between the ribs). For awhile, we expected this to be the definitive next step on the heart side of Sam's journey. But then, after the MRI, Dr. Doomy indicated that they might go fix it or they might wait. It all depended on what the Neurology team said.
So here we were, with a clear next 6 months from Neurology. We expected that Sam would be having a procedure this summer...just not the initial one we had planned on. This was reinforced when Dr. Doom had told us that he felt the PDA was putting more pressure on Sam's heart than the fistula was now. It sure sounded like an intervention was in order. So I placed a call into Dr. Doom and his nurse Linda. I expected to hear that we would have to go back into Cardiology and schedule his next surgical procedure. A day later, Elisa got a call back from Linda. The news, as is par for the course at this point, was unexpected.
Linda was completely supportive of Sam's improvement, as was Dr. Day/Doom. In fact, Dr. Doom was comfortable enough to treat Sam like any other patient that "only" had a PDA. Dr. Doom wanted to wait until Sam was 3 years old. That's right. No Neurology consult for 6 months. And a potential 2+ year delay on any heart intervention. Linda pressed forward. Sam was recovering. His last echocardiogram still showed an enlarged heart, but progress had definitely been made. So what were the next steps? How were we supposed to act? As if Sam had been okay the whole time, apparently. Linda's direct quote was "treat him like the normal baby that he is". A normal baby? What was that? The idea felt foreign to me. How do you treat a fragile child as if he wasn't so fragile? Through a return call by me to Linda, I started to understand what it meant.
Quickly, I realized that this bit of advice had less to do with Sam and more to do with Elisa and me. First, we were told to get Sam off of the pulse oximeter. Apparently, living like a hawk, circling those numbers every night, was not helpful to us or to Sam. He was getting better, and our incessant worries about his numbers was just going to force us to "hold on" to some of Sam's interventions for our own sanity and sense of calm. So the pulse oximeter would have to be turned off. I silently pondered how long it would be until we could sever that security blanket. Second, we needed to get out and stop living around Sam's "condition". To be fair, we already knew this part and since he had come of oxygen (during the day) in January, we'd started venturing out of the house. That seemed to be one we could tackle. And the third? Well, it had to do with out third goal anyway. Sam's medications.
With the newfound confidence in Sam's condition, at least for the near future, I pushed a bit harder on what Dr. Doom's medication plan was. Since Sam had come home, we had become used to Sildenafil three times a day, Zantac twice a day, and added Lasiks twice a day, which was added to our daily routine after Sam's heart failure. After our January appointment, we had moved Sam down to Lasiks once a day, but the medications still seemed to be a little dissonant with Sam's immediate prognosis. So we started with the Sildenafil, knowing that the Zantac would last as long as the Viagra did. This was a bit of a mixed bag, in terms of Linda's answers. No, we couldn't just get Sam off of the Sildenafil. But, unbeknownst to us, Dr. Doom had already been working on getting Sam off of the Sildenafil. Before Sam's heart failure, we moved from 1.6 ml to 2.0 ml, based on Sam's growth and larger size. I never realized that for the next 5 months, Dr. Doom didn't increase Sam's dosage. So while we were continuing to give him his medications, he was actually getting less and less of it (per his size) with every ounce that he was gaining. He would grow out of it, per Linda. And then they would take him off of the Sildenafil. Knowing that this was good, but not immediate enough, I turned my attention to the Lasiks. Could we get him off of that, at least?
Linda ended up consulting with Dr. Doom on this, but the response was cautiously optimistic. They didn't want to rush Sam off of the diuretic, but they were willing to start the process, albeit with baby steps. We'd move to Sam having Lasiks 2 out of every 3 days. That meant that Sam would actually have 2-3 days per week without one of his medications! Joined with the great sign that Dr. Doom hadn't increased Sam's Sildenafil for months, we felt we could cross #3 off the list. That just left pesky #2. And that blessed pulse oximeter.
I thought it would take weeks, if not months, to sever the ties to that machine. For all of the pain and worry the pulse oximeter had brought, it was still so comforting to see good statistics when Sam was out of our sight and room, in the middle of the night. It had been critical as we took him off of oxygen, simply to know that he was still okay. And when a nightmare took hold (and Elisa and I have had plenty in nine months), we could see the numbers and know that it was all a bad dream. It had been the last indicator that Sam needed to go to PCMC (when heart failure had begun to take hold). It was the first thing I checked in the morning and the last thing before I'd allow myself to fall into an uneasy sleep. How could we let go of that? The answer was simple. We had to. For Sam, and for our own longterm insanity.
We took one more night with the pulse oximeter on, and then we pulled it off. It officially went away in early May, and although we talked a few times about putting Sam back on it, just to see how he was doing, that idea never came to full fruition. The first night, I'd wake up every hour and stare at the little monitor. Without numbers, I'd focus intently on the small image of Sam, hoping I'd see him move or take a breath. The next night, it was easier. And the next. And the next. Now a full month removed from the pulse oximeter really being a part of our life, I still check the monitor 2-3 times per night but it more out of habit than out of fear. We were, as best we could, starting to treat Sam like "the normal baby that he was".
So here we are. Sitting in the middle of June, with Sam slowly coming off of Lasiks, off of oxygen completely, and unplugged from the pulse oximeter for over a month. We're trying to see (and are starting to succeed) Sam as a normal baby. He's still our miracle. He's still our porcelain doll. But he's also showing signs of being that normal baby that we were told we have. It was time to embrace that and start enjoying every second of this wonder boy in our lives. Because at multiple times in his first 3 months, we didn't think we would have him with us. The idea of a 9 month old Sam seemed foreign. Now, we're hurtling toward a 1 year birthday with daylight in front of us...stretching as far as the eye can see.
While we're current with Sam's journey now, we're not current with the blog. We have one more to go until I can officially say I'm caught up. After this momentous news, Elisa and I are starting to really appreciate what the journey has entailed, and how many people were there for us when they didn't have to be. It's about time to celebrate Sam, rather than worry about him. It's about time to celebrate you too.
Until next time...
Monday, June 09, 2014
Saving Sam (Chapter 5.09): Well ain't that a kick in the head?!
It's one thing to have Dr. Doomy tell you to just go home and pull your kid off of oxygen that night. It's quite another thing to go home and actually do that. Sure, we had left our MRI experience full of more hope than we were planning on, and the echo results gave us, at the very least, a pause on the heart front of Sam's condition, but to go home and say "okay, Sam...you're back off of the good stuff!" proved harder than Elisa or I could have imagined. We stared at each other as we had wrapped Sam in his blanket and just finished giving him his evening dosage of Sildenafil. To oxygen or not to oxygen? It wasn't really a decision. The cannula was back on Sam, his oxygen saturations were in the 98 region, and the pulse oximeter was firmly on Sam's foot. We went back to our room, and stared at each other again. I could almost feel a collective deep breath between us. Sure, we had gotten through the MRI. But the next day would be the bigger deal - the actual reason for the MRI, in fact. And trying to arrange this appointment proved to require a lot of follow-up.
You see, we didn't want to waste more time...we didn't want to delay because two doctors in two adjacent hospitals weren't in the same room. So when we had scheduled our original MRI and Brockmeyer visit, I called incessantly to his nurse until it was confirmed that Dr. Tosky would be there as well. So when I called during the Nurse Over MRI freakout of 2014, I probably overwhelmed the nurse with my specific desires to move the Brockmeyer/Tosky reunion back two weeks (this was early May, for those trying to piece together our timeline since I went blog quiet for a few). Fortunately, the reschedule was arranged and it seemed as though we would have both rock stars in the same place...probably for the first official time since December, as we had to remember that Tosky never did this on babies. He didn't have much reason to be across the bridge at PCMC.
This was a very big visit, for those unaware. Rewind all the way back to our December 8-13 stay at PCMC to understand. After a critical embolization that saved Sam's life, Brockmeyer and Tosky both talked about the "long road ahead". This was just the first embolization, of many. And if embolizations were no longer able to accomplish what Sam needed, we would explore brain surgery. Tosky, for his part, felt very proud of the work we had already accomplished. 40-50% reduction in flow with no adverse side effects. He knew another would be appropriate, but he wanted time to get Sam even bigger. His overall goal was 2 months, if Sam would oblige. His dream was 6 months. We sat at 5+ months when Sam headed back into the Neurosurgery wing of PCMC to meet with his two brain doctors. It seemed that we were right on track for that six month embolization. But any time you talk about matters of the brain, there should always be a pit in your stomach. Whenever I think of anything involving his head, I'm reminded of a Dr. Doom-ism. "The heart is a dumb muscle. It will return to normal if you fix the cause, and it doesn't know any different. But the brain...you only have one chance at the brain."
So here we were, our third PCMC visit in the last two weeks. We had two things on the agenda. Figure out the next steps for Sam's fistula, and get Elisa more of those slipper socks (in just an evening, she'd fallen in love). I figured we should leave the socks for after the slightly more important, and scheduled appointment. We walked back and checked in for Dr. Brockmeyer. It's interesting. In Same Day Surgery, I was struck by how tired the parents looked. I felt bonded to them. Here, in the neuro wing, I was struck by the children and the overwhelming permanence of most of their conditions. Children in wheelchairs. Children needing help to eat, or to even go to the bathroom. There was one child moaning to the air around him back by one of the windows. Another child was playing a video game with such focus and attention that I wondered if this simple game was the most sensical thing in his life. I was sure, as I watched the mother get a slight respite from watching him, that it was for her. I was bonded to these parents too, but more out of wonder and adoration than anything else. These parents came packed and prepared. I was struck by the backpacks. Sure, they were overfilled and strategically affixed to a wheelchair or the child. No, that's not what struck me. It was was adorning all of the backpacks. Meaningful tokens over the course of years, collected both as mementos to where the child had been, but also a lasting memory of just how long they must have been dealing with their child's neurological condition. I wanted to reach out to each of them and tell them how strong they were. Instead, I selfishly stared at Sam and felt thankful that his condition could be fixed. And then I felt ashamed. I looked away.
A few minutes later, we were called back to begin our biggest appointment of 2014. We were assured that Dr. Brockmeyer and Tosky would be gracing us with their presence, but first we needed the neurological nurse check. Thankfully, it only included a measurement of Sam's head. Yep, in neuro they really only stick to what's above the neck. I lovingly remembered our last time at Neuro, when Sam was crackling and sounded pretty awful after his November MRI and so we had decided to ask Brockmeyer about it. He literally stared at me as though I were a moon rock. His diagnosis? Cross the hall and ask them in Cardio. Yep...only stuff above the neck.
Of course, the appointment had to start with a bit of trepidation After measuring Sam's head, the nurse remarked that it was higher on the growth chart than the last time. Perhaps I've just spent enough time in children's hospitals to know when a nurse or doctor says something that is good vs. bad. She said it as though it was a possible concern. "It's still within range..." she added, but I immediately worried. Elisa calmed my nerves a bit by adding "well, he's always had a big head". Good girl. Give me something to laugh about at the minute that I'm starting to feel a building anxiety. And with that, the nurse was out of the room. And we were back to waiting. Although, not for long. We heard the dulcet tones of Dr. Tosky right on the other side of our door.
And in he came. The same man, although I appreciated seeing him in a scheduled visit as opposed to when he trekked across the bridge to see if he could save our little Sam's life. I'm so appreciative to this man, but I must admit that my most clear memory of the man is when Elisa was out of the room prior to Sam's embolization. Dr. Tosky stopped by (it was the morning of the big surgery), and I said "well, he has to have this now." Dr. Tosky's response, while truth that I already knew, stung my soul and cooled the air. "Yes, he does. Or he will die." He didn't say it coldly, or without heart. It was just the fact of the situation. And the gravity of it was required. We needed to know the stakes. Today, however, he was smiles. A welcome face and the true hero we believed in (more on that later).
Dr. Tosky greeted us immediately and commented on how big Sam had gotten. He said that he looked good, and he wanted to know how things were. Whereas we had run off all of the details of Sam's cold just a day before to get past the nurse to allow for the MRI. Today, it was refreshing that the things we talked about were the good things. Sam's improvement post embolization. Getting off of oxygen during the day (and for a brief period at night). Growing. Happy. Content. Sure, still retracting but we were pleased. Dr. Tosky did a brief examination and said he was pleased that Sam was doing so well. And then he started talking...about things we just weren't expecting to hear. Before I get to the content, I must admit that Tosky talking before Brockmeyer's arrival did kind of smell of doctor oneupsmanship. You know - give his thoughts before Brockmeyer had his chance. I smiled. What he was saying was more important than that. And very, very unexpected.
Tosky started by explaining when they tend to intervene. He gave three criteria. 1) he's in heart failure. 2) He's not thriving/growing. 3) There are neurological issues present. As he said them, I quickly thought of Sam. He was clearly out of heart failure, proven by the echo results from the previous day. He was growing. I was celebrating him clearing 17 lbs. just a day before. And he was hitting his milestones, catching up on some earlier delays now that the embolization had pulled him from the edge. I wondered if he was saying what I was hearing. It was like he knew that this thought was rolling around in my head. He told us that he saw no need to intervene at this point, provided they didn't see anything strange when they brought up MRI results in the appointment. We were silently in shock. No embolization this summer? If not now, then when? Tosky stated that the embolization that took place was very, very difficult. He talked about how much easier it is in adults. Very little risk, and a much easier procedure to get in and fix the issues. Literally, every week that Sam grew (and every ounce that he gained), he was making the job easier for Tosky. He'd be there when ready, but there was no need to get involved right now.
Elisa put it best as we were wrapping up our visit (Brockmeyer had yet to arrive). I thanked him profusely. Elisa put it in better terms. "You're our hero". I immediately nodded. Tosky immediately looked at Sam and got an expression that was the perfect mix of embarrassment and pride. He thanked us and exited. He said he'd try to find Brockmeyer. After he left the room, we stared at each other. No embolization? No summer nights at PCMC? We had expected a lot, but I don't think either of us expected this. Yet, this was just the start. Brockmeyer's voice was heard outside our door. The room was about to get a little more crowded.
Dr. Brockmeyer walked into the office - and we went through the same cursory conversation that we had just had to Tosky. We talked about Sam's progress. He briefly examined him, and then he fired up the computer to have a look at the MRI results. Nothing concrete yet from Brockmeyer, but he didn't seem overly concerned. As I was reminded of the words of Tosky pre-embolization, as he tried to access the MRI results and images, I remembered the last time I had seen Brockmeyer. It was the day we were released from PCMC, and I told him (again, I was without Elisa) that everyone seemed very pleased with Sam's progress. He had a measure of caution..."Sam has a long road ahead. This is just the beginning." After hearing from Tosky on this day, I wondered what Brockmeyer would say of Sam's journey.
Tosky walked in the room just as Brockmeyer got the images up on the screen. They turned away from us, and Elisa and I spent the next few minutes trying to contort our bodies to see the screen. They muttered between them. I heard Brockmeyer say that he saw "no change". I got a bit worried...no change from the embolization? That had to be bad, right?
No, it turns out. It's what they were hoping to see. Besides some images showing it a bit larger, which they chalked up to Sam's growth, the fistula hadn't changed since they last got images. And that meant...confirmed by both Tosky and Brockmeyer...no intervention for now. Tosky told us again that he was glad Sam was doing well, but that he needed to exit. After he left the room, we got a little more detail from Brockmeyer. He dropped two nuggets. One made our mouths fall open. One made us stare back at the door that Tosky had just walked through.
First, with news that the intervention wouldn't be happening, Elisa asked the next logical question. When, then? As she stated, "but you will have to eventually fix the fistula, right?" Dr. Brockmeyer shocked us both. "Maybe. Maybe not. I'm not sure that we will. It depends on if Sam continues to grow and thrive." Wait a minute. It's one thing to say that we're not going to have a summer intervention/embolization. It's quite another thing to suggest that we might never have to intervene with the fistula. It was in this moment that I flashed back to the day before, and something Dr. Day said. Maybe I heard him but was so focused on Sam, I didn't process it. But Dr. Day, near the end of our visit where he told us to get Sam back off oxygen, added "I think the PDA is putting more pressure on his heart now than the fistula". Brockmeyer's comment melded with Dr. Day's. Perhaps, just perhaps, this was truly happening. Sam wouldn't need to have an embolization in the near future. He might not have to have another one ever again. Sure, it was a maybe. But a maybe I could absolutely live with. But Brockmeyer wasn't done. He had to make use realize just how fortunate we were to be in that moment, and who we owed it all to.
I was still recovering from the news that Sam's fistula might never need intervention. And then Brockmeyer showed the wizard behind the curtain. He showed us how lucky we really were. Dr. Brockmeyer stressed to us just how dangerous Tosky's surgery was, on a 3 month old. Sure, it was a big deal, but that big of a deal? Apparently, what Tosky did was near unheard of on such a small child. Part of it was the fact that he did it on such a small child. The "miracle", as Dr. Brockmeyer put it, was that no adverse effects had come from it. As the words escaped his mouth, I was transported back to December 9th, in the PCMC PICU. Drs. Day, Tosky, and Brockmeyer were in the room, along with about 5 nurses, an attending, 2 residents, and I'm not sure how many interns. Dr. Tosky was going over all of the potential problems that could occur, including, but not limited to: neurological problems, stroke, losing a leg, death, heart failure. As Brockmeyer was telling us now, I became very aware that this meeting in December hadn't been "oh, these are the risks". They expected one of those risks to come to fruition. Tosky's work was a medical miracle in that all of them were avoided, AND the pressure was taken off of Sam's heart.
My eyes drifted from Brockmeyer's stoic face to the door to my left. The one Tosky had just walked through. Suddenly, Elisa saying "you're our hero" didn't seem to be nearly enough. Not by a mile.
You see, we didn't want to waste more time...we didn't want to delay because two doctors in two adjacent hospitals weren't in the same room. So when we had scheduled our original MRI and Brockmeyer visit, I called incessantly to his nurse until it was confirmed that Dr. Tosky would be there as well. So when I called during the Nurse Over MRI freakout of 2014, I probably overwhelmed the nurse with my specific desires to move the Brockmeyer/Tosky reunion back two weeks (this was early May, for those trying to piece together our timeline since I went blog quiet for a few). Fortunately, the reschedule was arranged and it seemed as though we would have both rock stars in the same place...probably for the first official time since December, as we had to remember that Tosky never did this on babies. He didn't have much reason to be across the bridge at PCMC.
This was a very big visit, for those unaware. Rewind all the way back to our December 8-13 stay at PCMC to understand. After a critical embolization that saved Sam's life, Brockmeyer and Tosky both talked about the "long road ahead". This was just the first embolization, of many. And if embolizations were no longer able to accomplish what Sam needed, we would explore brain surgery. Tosky, for his part, felt very proud of the work we had already accomplished. 40-50% reduction in flow with no adverse side effects. He knew another would be appropriate, but he wanted time to get Sam even bigger. His overall goal was 2 months, if Sam would oblige. His dream was 6 months. We sat at 5+ months when Sam headed back into the Neurosurgery wing of PCMC to meet with his two brain doctors. It seemed that we were right on track for that six month embolization. But any time you talk about matters of the brain, there should always be a pit in your stomach. Whenever I think of anything involving his head, I'm reminded of a Dr. Doom-ism. "The heart is a dumb muscle. It will return to normal if you fix the cause, and it doesn't know any different. But the brain...you only have one chance at the brain."
So here we were, our third PCMC visit in the last two weeks. We had two things on the agenda. Figure out the next steps for Sam's fistula, and get Elisa more of those slipper socks (in just an evening, she'd fallen in love). I figured we should leave the socks for after the slightly more important, and scheduled appointment. We walked back and checked in for Dr. Brockmeyer. It's interesting. In Same Day Surgery, I was struck by how tired the parents looked. I felt bonded to them. Here, in the neuro wing, I was struck by the children and the overwhelming permanence of most of their conditions. Children in wheelchairs. Children needing help to eat, or to even go to the bathroom. There was one child moaning to the air around him back by one of the windows. Another child was playing a video game with such focus and attention that I wondered if this simple game was the most sensical thing in his life. I was sure, as I watched the mother get a slight respite from watching him, that it was for her. I was bonded to these parents too, but more out of wonder and adoration than anything else. These parents came packed and prepared. I was struck by the backpacks. Sure, they were overfilled and strategically affixed to a wheelchair or the child. No, that's not what struck me. It was was adorning all of the backpacks. Meaningful tokens over the course of years, collected both as mementos to where the child had been, but also a lasting memory of just how long they must have been dealing with their child's neurological condition. I wanted to reach out to each of them and tell them how strong they were. Instead, I selfishly stared at Sam and felt thankful that his condition could be fixed. And then I felt ashamed. I looked away.
A few minutes later, we were called back to begin our biggest appointment of 2014. We were assured that Dr. Brockmeyer and Tosky would be gracing us with their presence, but first we needed the neurological nurse check. Thankfully, it only included a measurement of Sam's head. Yep, in neuro they really only stick to what's above the neck. I lovingly remembered our last time at Neuro, when Sam was crackling and sounded pretty awful after his November MRI and so we had decided to ask Brockmeyer about it. He literally stared at me as though I were a moon rock. His diagnosis? Cross the hall and ask them in Cardio. Yep...only stuff above the neck.
Of course, the appointment had to start with a bit of trepidation After measuring Sam's head, the nurse remarked that it was higher on the growth chart than the last time. Perhaps I've just spent enough time in children's hospitals to know when a nurse or doctor says something that is good vs. bad. She said it as though it was a possible concern. "It's still within range..." she added, but I immediately worried. Elisa calmed my nerves a bit by adding "well, he's always had a big head". Good girl. Give me something to laugh about at the minute that I'm starting to feel a building anxiety. And with that, the nurse was out of the room. And we were back to waiting. Although, not for long. We heard the dulcet tones of Dr. Tosky right on the other side of our door.
And in he came. The same man, although I appreciated seeing him in a scheduled visit as opposed to when he trekked across the bridge to see if he could save our little Sam's life. I'm so appreciative to this man, but I must admit that my most clear memory of the man is when Elisa was out of the room prior to Sam's embolization. Dr. Tosky stopped by (it was the morning of the big surgery), and I said "well, he has to have this now." Dr. Tosky's response, while truth that I already knew, stung my soul and cooled the air. "Yes, he does. Or he will die." He didn't say it coldly, or without heart. It was just the fact of the situation. And the gravity of it was required. We needed to know the stakes. Today, however, he was smiles. A welcome face and the true hero we believed in (more on that later).
Dr. Tosky greeted us immediately and commented on how big Sam had gotten. He said that he looked good, and he wanted to know how things were. Whereas we had run off all of the details of Sam's cold just a day before to get past the nurse to allow for the MRI. Today, it was refreshing that the things we talked about were the good things. Sam's improvement post embolization. Getting off of oxygen during the day (and for a brief period at night). Growing. Happy. Content. Sure, still retracting but we were pleased. Dr. Tosky did a brief examination and said he was pleased that Sam was doing so well. And then he started talking...about things we just weren't expecting to hear. Before I get to the content, I must admit that Tosky talking before Brockmeyer's arrival did kind of smell of doctor oneupsmanship. You know - give his thoughts before Brockmeyer had his chance. I smiled. What he was saying was more important than that. And very, very unexpected.
Tosky started by explaining when they tend to intervene. He gave three criteria. 1) he's in heart failure. 2) He's not thriving/growing. 3) There are neurological issues present. As he said them, I quickly thought of Sam. He was clearly out of heart failure, proven by the echo results from the previous day. He was growing. I was celebrating him clearing 17 lbs. just a day before. And he was hitting his milestones, catching up on some earlier delays now that the embolization had pulled him from the edge. I wondered if he was saying what I was hearing. It was like he knew that this thought was rolling around in my head. He told us that he saw no need to intervene at this point, provided they didn't see anything strange when they brought up MRI results in the appointment. We were silently in shock. No embolization this summer? If not now, then when? Tosky stated that the embolization that took place was very, very difficult. He talked about how much easier it is in adults. Very little risk, and a much easier procedure to get in and fix the issues. Literally, every week that Sam grew (and every ounce that he gained), he was making the job easier for Tosky. He'd be there when ready, but there was no need to get involved right now.
Elisa put it best as we were wrapping up our visit (Brockmeyer had yet to arrive). I thanked him profusely. Elisa put it in better terms. "You're our hero". I immediately nodded. Tosky immediately looked at Sam and got an expression that was the perfect mix of embarrassment and pride. He thanked us and exited. He said he'd try to find Brockmeyer. After he left the room, we stared at each other. No embolization? No summer nights at PCMC? We had expected a lot, but I don't think either of us expected this. Yet, this was just the start. Brockmeyer's voice was heard outside our door. The room was about to get a little more crowded.
Dr. Brockmeyer walked into the office - and we went through the same cursory conversation that we had just had to Tosky. We talked about Sam's progress. He briefly examined him, and then he fired up the computer to have a look at the MRI results. Nothing concrete yet from Brockmeyer, but he didn't seem overly concerned. As I was reminded of the words of Tosky pre-embolization, as he tried to access the MRI results and images, I remembered the last time I had seen Brockmeyer. It was the day we were released from PCMC, and I told him (again, I was without Elisa) that everyone seemed very pleased with Sam's progress. He had a measure of caution..."Sam has a long road ahead. This is just the beginning." After hearing from Tosky on this day, I wondered what Brockmeyer would say of Sam's journey.
Tosky walked in the room just as Brockmeyer got the images up on the screen. They turned away from us, and Elisa and I spent the next few minutes trying to contort our bodies to see the screen. They muttered between them. I heard Brockmeyer say that he saw "no change". I got a bit worried...no change from the embolization? That had to be bad, right?
No, it turns out. It's what they were hoping to see. Besides some images showing it a bit larger, which they chalked up to Sam's growth, the fistula hadn't changed since they last got images. And that meant...confirmed by both Tosky and Brockmeyer...no intervention for now. Tosky told us again that he was glad Sam was doing well, but that he needed to exit. After he left the room, we got a little more detail from Brockmeyer. He dropped two nuggets. One made our mouths fall open. One made us stare back at the door that Tosky had just walked through.
First, with news that the intervention wouldn't be happening, Elisa asked the next logical question. When, then? As she stated, "but you will have to eventually fix the fistula, right?" Dr. Brockmeyer shocked us both. "Maybe. Maybe not. I'm not sure that we will. It depends on if Sam continues to grow and thrive." Wait a minute. It's one thing to say that we're not going to have a summer intervention/embolization. It's quite another thing to suggest that we might never have to intervene with the fistula. It was in this moment that I flashed back to the day before, and something Dr. Day said. Maybe I heard him but was so focused on Sam, I didn't process it. But Dr. Day, near the end of our visit where he told us to get Sam back off oxygen, added "I think the PDA is putting more pressure on his heart now than the fistula". Brockmeyer's comment melded with Dr. Day's. Perhaps, just perhaps, this was truly happening. Sam wouldn't need to have an embolization in the near future. He might not have to have another one ever again. Sure, it was a maybe. But a maybe I could absolutely live with. But Brockmeyer wasn't done. He had to make use realize just how fortunate we were to be in that moment, and who we owed it all to.
I was still recovering from the news that Sam's fistula might never need intervention. And then Brockmeyer showed the wizard behind the curtain. He showed us how lucky we really were. Dr. Brockmeyer stressed to us just how dangerous Tosky's surgery was, on a 3 month old. Sure, it was a big deal, but that big of a deal? Apparently, what Tosky did was near unheard of on such a small child. Part of it was the fact that he did it on such a small child. The "miracle", as Dr. Brockmeyer put it, was that no adverse effects had come from it. As the words escaped his mouth, I was transported back to December 9th, in the PCMC PICU. Drs. Day, Tosky, and Brockmeyer were in the room, along with about 5 nurses, an attending, 2 residents, and I'm not sure how many interns. Dr. Tosky was going over all of the potential problems that could occur, including, but not limited to: neurological problems, stroke, losing a leg, death, heart failure. As Brockmeyer was telling us now, I became very aware that this meeting in December hadn't been "oh, these are the risks". They expected one of those risks to come to fruition. Tosky's work was a medical miracle in that all of them were avoided, AND the pressure was taken off of Sam's heart.
My eyes drifted from Brockmeyer's stoic face to the door to my left. The one Tosky had just walked through. Suddenly, Elisa saying "you're our hero" didn't seem to be nearly enough. Not by a mile.
Friday, June 06, 2014
Saving Sam (Chapter 5.08): Second verse, same as the first?
It's moments like the two weeks between our first failed MRI attempt and our second journey to Same Day Surgery that make me realize just how compatible Elisa and I are. You see, when we're told that something can't be done, we come together. We're motivated and don't like being told what we can and can't do, or what we can or can't accomplish. Remember the lioness? And the lion? Need I say more? So after Nurse Over put the capper on the last MRI, we went into the next two weeks very motivated. Before we were denied the MRI, Elisa and I had tried to fit in Albuterol treatments into our day. We were so encouraged with Sam's improvement, we failed to do a breathing treatment in the two days leading up to Nurse Over. After being denied, however, we went on a mission. Sam was getting albuterol treatments every 4 hours. We directed my Mom to join the fun on the days that we had to go to work. We were sucking his nose constantly, keeping everything around him clean. Oxygen was firmly attached during the evenings. Every precaution would be considered to make sure that Sam's next MRI would take place, and we could start moving towards his next embolization. It's quite impressive to see us motivated. It's another world to just see how devoted and committed Elisa becomes to the cause. She coordinated schedules to maximize the treatments. She rubbed essential oils on Sam, and made sure they were in Sam's humidifier. She was a machine. A focused machine. A protective lioness.
Two weeks later, we were in the car and heading up for Sam's next MRI attempt. It's funny how a poor experience can change your perspective completely. It's quite strange that things changed in such a small period of time. Two weeks ago, we were almost overconfident. Sure, Sam had a cold that he was recovering from. But they'd do the MRI. It took us by complete surprise when we started realizing that the MRI might not take place. This time, I was almost expecting to be denied again. After all, Sam's congestion wasn't completely gone. He still had a little cough. There existed enough signs that would encourage a Nurse Over to really go into overdrive. Maybe she'd even suggest admittance to PCMC. I openly wondered if attacking a nurse for that reason would be considered a justifiable reason in the court of law. But we went in hesitant, and full of doubt. I kind of felt that I would be surprised if we got a green light, and proceeded forward. At least no one could say we weren't prepared, though. We'd done everything in our power to get Sam past his cold. It was now in the nurse's hands. We just hoped it wouldn't be the SAME nurse. I couldn't guarantee her safety.
This time, our MRI was scheduled for a couple hours later in the morning. Who knew that it would make our wait that much longer. Same Day Surgery was a much busier place, and I was too focused on Sam and getting the green light to pay attention to the sad stories and run down parents on this day. Plus, as we waited longer, Sam was getting impatient. After all, he hadn't eaten for 4 hours, and if you have had an infant, you know that eating is kind of their favorite thing...on schedule. So we walked up and down the hall outside Same Day Surgery. Outside the sad waiting room, I was more surprised to see the excellent people watching in the hall. Maybe it's because the collection of people in the halls were visitors and not parents to bond to, but I was more taken back by their interesting fashion choices, annoying parental approaches, or strange collection of snacks and food...at a hospital.
Soon enough, though, we were called back. I was immediately happy to see that Sam had put on a few more ounces. He was well above 17 lbs. now. We were escorted into the room and watched the nurse's assistant give Sam the once over. No comments. Not a word about the cold. We waited for the other nurse to come in. I had too much nervous energy. Why? I know...it's just a MRI, right? It could be delayed again. And you're right. It's just a MRI. It could have been delayed. But it felt like the key next domino to fall in Sam's story, and we were eager to look at him and not have a cloudy vision of what was to come. We needed that MRI. I didn't want to wait any longer. I'm sure the nurse that walked into the room quickly discovered this fact, as I didn't waste any time launching into a whole story about Sam being way past his cold, the albuterol treatments, and how much improved he was. The nurse probably thought I needed a valium. After I overcompensated for my fears of another delayed MRI, we let her take a look at Sam. And discovered quickly that this was no Nurse Over.
She was calm, and very confident about Sam and the coming MRI. Sure, she listened to his lungs and asked a couple questions about his cold. But his oxygen saturations looked great (100!), his heart rate was in the high 120s, and the happy little boy (well, except for being ravenous!) seemed just fine. So after a few minutes, she escorted us out of the examination room, down the hall, and into another waiting room. The MRI was on. Yet, instead of feeling relieved or happy that we had overcome another Nurse Over incident, I was suddenly anxious. Sam would be having the MRI. Sam would be put under. I wondered how he would handle it.
For the moment, though, we settled into our new waiting room chairs and heard that we were at least 30 minutes out. Elisa, the expert momma, carefully rocked Sam, who had grown more agitated with a lack of food, and before we knew it, he was sleeping comfortably in her arms. I could see the pure love in Elisa's eyes as she watched him sleep. Sure, she was anxious too, but over the past few weeks, I had really noticed how much enjoyment Elisa was getting from her little boy. We had some semblance of normal, even if those moments were punctuated with oxygen, albuterol, and a bulb syringe. She was getting snippets of a healthy baby. She was loving the catch up she was experiencing, as she had been so robbed of the first few months of Sam's life. You must understand that the infant stage is Elisa's favorite. She lost so much. Here, waiting for a MRI (which was definitely an unexpected place when we were thinking of Sam before he was born), Elisa was snuggling her little boy so closely, so lovingly. I couldn't help but stare.
30 minutes later, we found out that we'd have to wait for another 20 minutes. I suddenly wished that we had the early MRI. Being the second meant that we were at the whim of the first, and things were apparently going a bit too slowly. At least I had Iron Man 3 to entertain me, right? They had so many things going on to entertain the children. Frozen was playing behind us. I saw another screen with Little Mermaid. I won't deny that while Elisa was obsessed with a sleeping Sam, I was entranced by Gwyneth Paltrow and Robert Downey Jr. on screen. Sue me. It filled the time, as we ended up waiting another 30 minutes before we got a quick visit from Dr. Day. You know, for all the grief I give Dr. Doom in these blogs, anytime we are in that hospital, he finds us. It's one of the most comforting and truly remarkable actions I've ever seen from a doctor. He's busy. He has his appointments, cath lab, and probably a million consultations. But he's dialed in enough to know that we were in the hospital and Sam was having his MRI. He informed us that while the plan had been to get Sam his echo after the MRI, no one had really coordinated it. He went over to the nurse's desk and worked things out. He'll always be Dr. Doom. He earned that moniker. But that doesn't mean he hasn't become one of my favorite doctors ever. Flawed? Absolutely. But the man cares. About Sam. About us. About his patients. And when you really think about it, how often do you really find that in a doctor these days?
After bidding adieu to Dr. Day, we were finally escorted downstairs to Imaging. With every step, I became more aware that I would have to soon say goodbye to my precious little Sam again. I hated that part. It had happened so many times when we were in the NICU at St. Mark's, but they were really the hardest when he was at PCMC. The day that Elisa and I, with tears streaming down our faces, said good luck to little Sam before his embolization has been permanently etched into every other time I have to say so long. We made our way through the familiar halls, and into a familiar prep room, where they would put Sam to sleep. Now that we were down here, there was no lingering worry about his cold. No plans to stop and return in a few weeks. We were committed. They were prepping to put Sam into a very light sleep. They got him situated and started giving him some gas to breathe. It would relax him until they could officially use the anesthesia. Elisa and I went back to say good luck 3-4 times each. It was a strange sensation, reaching down and kissing him in such a sterile hospital environment, my nostrils filled with the smell of strawberries (the chosen flavor). I was immediately reminded of my initial feelings about PCMC. A hospital with horror stories, wrapped up in balloons, bright colors, and "bubble gum". Sam's pending anesthesia, surrounded by the sweet smell of strawberries.
Sam looked over and stared into my eyes when I said my last "good luck, buddy!" and started to walk out. Those brilliant blue eyes were clearly wondering where daddy and mommy were headed, but he didn't cry as we walked down the hall. Soon enough, we were out of imaging and heading towards our first distraction while we waited for the 90 or so minutes. Coffee was first on the agenda. We had become so educated on PCMC that we knew about all of the coffee options. Our favorite was still "Brews on 3rd"...a quaint little "cart" on the 3rd floor. We got our coffees and headed down to the expanded gift shop of PCMC. I was amazed at how much construction and change had taken place since Sam had last been admitted. In our September/October visit and December visit, the front area of the hospital was in full construction. Now, they were just wrapping things up in creating an open, natural light entrance to the hospital. I appreciated the more natural and subtle design to the aquarium-ish entrance of the past. It felt more peaceful. More comforting.
We perused the gift shop and Elisa found some slipper socks...for her. At of all places, a children's hospital. My eyes fell to a small little bear with a yellow sweatshirt on that read "Get Well". She got her socks, Sam got a new friend. It seemed fitting, as the last time we were at PCMC, we ended up going onto Amazon to order a Lion King musical attachment to Sam's crib. Maybe we were destined to bring something home from each of these milestone experiences at PCMC. It felt good, though. It felt like a special thing to be able to give to him when we would see him next. Speaking of, we went back to the waiting room and sat around, wondering how much longer it would be. Your mind does some crazy things when the "prescribed" time passes. If a doctor says an hour, you start worrying at 61 minutes. We were told 90 minutes. We started worrying at about 90 and a half. Dr. Day came by, though, and gave us a quick update that they had needed a few more images, and then would be doing the echo. I honestly doubt anyone else would have even told us had Dr. Day not found us, yet again. Dr. Doom...the most thoughtful bunch of gray clouds that you could ever imagine.
Eventually, though, we did get the word that we could go back and see Sam. One of the worries heading into this was that Sam had to be intubated. That meant there was a risk of not being able to extubate him. And that meant a night at the hospital. So that was the first anxiety as we walked down the halls to the Imaging Recovery room. However, the minute we saw him, peacefully sleeping, we realized we didn't have an extubation to fear. Sam was without a tube in his mouth. He didn't even have a cannula - instead, they were doing blow by oxygen to keep his stats up. When we arrived, they were just bringing him out of the anesthesia...I was curious to see how he would respond this time. Last time, as I said in my last blog, ended up unknowingly being the first indication of Sam's eventual heart failure. I was curious what the experience would be this time.
And early on, I was quite worried. Sam was very cranky as he woke up, but didn't seem to be satisfied. We tried to feed him, but he'd cry. We tried to hold him, but he'd cry. He'd scream when we put him down. He was generally an unhappy baby. More concerning than his attitude was his numbers. His heart rate was fine, but he didn't seem to be able to hold his oxygen saturations (asleep or awake) without the oxygen. We got a brief guilt trip from the nurse that we hadn't brought oxygen with us. Color us used to Sam not being on oxygen. I started to think I'd have to run home and Sam would be brought back with oxygen during the day...something that hadn't happened since January. We kept giving him blow by oxygen, though, and tried to get Sam happy. While he wouldn't eat consistently, I was still convinced that he was frightfully hungry, so I suggested that Elisa try one more time and she suggested I grab the iPad, which conveniently had Frozen on it. And that was the trick we needed. With a movie and milk, Sam finally started to settle down. And he ate very well. Thankfully, the more he ate, the more calm he became. And sure enough, by the time we had hit the first real song in the movie, Sam was content.
The guilt trip nurse, however, redeemed herself in my eyes (I didn't appreciate the guilt...I have enough of that on my own considering it was my genetic condition that caused this whole thing!) when she came over and informed us that Sam (sitting at 98 oxygen saturation) had been without oxygen for the last 10 minutes. She turned it off when he finally settled to eat, and was now confident that Sam would be fine leaving, even without a cannula. We removed the IV (which improved Sam's mood), and about 15 minutes later, we were packing Sam up and getting ready to go home. What a difference from our November MRI. Yes, we went home after that one, but Sam had a crackle, was miserable, and was with cannula. This boy seemed content, had no oxygen, and even better, had zero crackling noise to be heard. We guessed that due to the intubation, they did industrial strength suckle of his nose and throat. He sounded better than he had in weeks. I jokingly said that if Nurse Over had just let us progress, Sam would have sounded better two weeks earlier.
Before we left, we got our third and final visit from Dr. Day. This time, he was with his nurse coordination (Linda...we love her) and he wanted to give us the echo results. I braced myself, but didn't need to. Dr. Day was, again, not so gloomy. He stated that the echo results looked "pretty good". The right side of Sam's heart was not as big as it previously had been, and the pressures looked okay too. Was he perfectly healthy? No, not yet, but the results were very encouraging. Dr. Day told us to go home and get Sam back off the oxygen, and we would find out what Brockmeyer and Tosky's plans were the next day. When we inquired about the PDA, Dr. Day stated that he was undecided on whether or not to fix it quite yet, but we would see. He even mentioned that we could start considering how to get Sam off of the Lasiks. Wow. That was a nice cherry on top of a stressful day.
And with that, we were back in the car and driving home. Two visits to PCMC for one MRI, but the echo results were encouraging and Sam seemed to be holding his own. Even better, about 15 minutes after we had gotten home, Sam was sitting on the floor, playing...as if he hadn't had a MRI at all. No crackling. No crankiness. No health concerns to be seen. At least, not on the surface. I smiled at the little man, as he made his playful noises and threw a pacifier a few feet away. And then I steeled myself for the bigger reality. For as good as Sam looked, and as smooth as the MRI ended up going, and as hopeful as the echo results seemed, the bigger appointment was just 24 hours away.
Brockmeyer and Tosky would be waiting. And Sam's next step in his journey would be written.
Two weeks later, we were in the car and heading up for Sam's next MRI attempt. It's funny how a poor experience can change your perspective completely. It's quite strange that things changed in such a small period of time. Two weeks ago, we were almost overconfident. Sure, Sam had a cold that he was recovering from. But they'd do the MRI. It took us by complete surprise when we started realizing that the MRI might not take place. This time, I was almost expecting to be denied again. After all, Sam's congestion wasn't completely gone. He still had a little cough. There existed enough signs that would encourage a Nurse Over to really go into overdrive. Maybe she'd even suggest admittance to PCMC. I openly wondered if attacking a nurse for that reason would be considered a justifiable reason in the court of law. But we went in hesitant, and full of doubt. I kind of felt that I would be surprised if we got a green light, and proceeded forward. At least no one could say we weren't prepared, though. We'd done everything in our power to get Sam past his cold. It was now in the nurse's hands. We just hoped it wouldn't be the SAME nurse. I couldn't guarantee her safety.
This time, our MRI was scheduled for a couple hours later in the morning. Who knew that it would make our wait that much longer. Same Day Surgery was a much busier place, and I was too focused on Sam and getting the green light to pay attention to the sad stories and run down parents on this day. Plus, as we waited longer, Sam was getting impatient. After all, he hadn't eaten for 4 hours, and if you have had an infant, you know that eating is kind of their favorite thing...on schedule. So we walked up and down the hall outside Same Day Surgery. Outside the sad waiting room, I was more surprised to see the excellent people watching in the hall. Maybe it's because the collection of people in the halls were visitors and not parents to bond to, but I was more taken back by their interesting fashion choices, annoying parental approaches, or strange collection of snacks and food...at a hospital.
Soon enough, though, we were called back. I was immediately happy to see that Sam had put on a few more ounces. He was well above 17 lbs. now. We were escorted into the room and watched the nurse's assistant give Sam the once over. No comments. Not a word about the cold. We waited for the other nurse to come in. I had too much nervous energy. Why? I know...it's just a MRI, right? It could be delayed again. And you're right. It's just a MRI. It could have been delayed. But it felt like the key next domino to fall in Sam's story, and we were eager to look at him and not have a cloudy vision of what was to come. We needed that MRI. I didn't want to wait any longer. I'm sure the nurse that walked into the room quickly discovered this fact, as I didn't waste any time launching into a whole story about Sam being way past his cold, the albuterol treatments, and how much improved he was. The nurse probably thought I needed a valium. After I overcompensated for my fears of another delayed MRI, we let her take a look at Sam. And discovered quickly that this was no Nurse Over.
She was calm, and very confident about Sam and the coming MRI. Sure, she listened to his lungs and asked a couple questions about his cold. But his oxygen saturations looked great (100!), his heart rate was in the high 120s, and the happy little boy (well, except for being ravenous!) seemed just fine. So after a few minutes, she escorted us out of the examination room, down the hall, and into another waiting room. The MRI was on. Yet, instead of feeling relieved or happy that we had overcome another Nurse Over incident, I was suddenly anxious. Sam would be having the MRI. Sam would be put under. I wondered how he would handle it.
For the moment, though, we settled into our new waiting room chairs and heard that we were at least 30 minutes out. Elisa, the expert momma, carefully rocked Sam, who had grown more agitated with a lack of food, and before we knew it, he was sleeping comfortably in her arms. I could see the pure love in Elisa's eyes as she watched him sleep. Sure, she was anxious too, but over the past few weeks, I had really noticed how much enjoyment Elisa was getting from her little boy. We had some semblance of normal, even if those moments were punctuated with oxygen, albuterol, and a bulb syringe. She was getting snippets of a healthy baby. She was loving the catch up she was experiencing, as she had been so robbed of the first few months of Sam's life. You must understand that the infant stage is Elisa's favorite. She lost so much. Here, waiting for a MRI (which was definitely an unexpected place when we were thinking of Sam before he was born), Elisa was snuggling her little boy so closely, so lovingly. I couldn't help but stare.
30 minutes later, we found out that we'd have to wait for another 20 minutes. I suddenly wished that we had the early MRI. Being the second meant that we were at the whim of the first, and things were apparently going a bit too slowly. At least I had Iron Man 3 to entertain me, right? They had so many things going on to entertain the children. Frozen was playing behind us. I saw another screen with Little Mermaid. I won't deny that while Elisa was obsessed with a sleeping Sam, I was entranced by Gwyneth Paltrow and Robert Downey Jr. on screen. Sue me. It filled the time, as we ended up waiting another 30 minutes before we got a quick visit from Dr. Day. You know, for all the grief I give Dr. Doom in these blogs, anytime we are in that hospital, he finds us. It's one of the most comforting and truly remarkable actions I've ever seen from a doctor. He's busy. He has his appointments, cath lab, and probably a million consultations. But he's dialed in enough to know that we were in the hospital and Sam was having his MRI. He informed us that while the plan had been to get Sam his echo after the MRI, no one had really coordinated it. He went over to the nurse's desk and worked things out. He'll always be Dr. Doom. He earned that moniker. But that doesn't mean he hasn't become one of my favorite doctors ever. Flawed? Absolutely. But the man cares. About Sam. About us. About his patients. And when you really think about it, how often do you really find that in a doctor these days?
After bidding adieu to Dr. Day, we were finally escorted downstairs to Imaging. With every step, I became more aware that I would have to soon say goodbye to my precious little Sam again. I hated that part. It had happened so many times when we were in the NICU at St. Mark's, but they were really the hardest when he was at PCMC. The day that Elisa and I, with tears streaming down our faces, said good luck to little Sam before his embolization has been permanently etched into every other time I have to say so long. We made our way through the familiar halls, and into a familiar prep room, where they would put Sam to sleep. Now that we were down here, there was no lingering worry about his cold. No plans to stop and return in a few weeks. We were committed. They were prepping to put Sam into a very light sleep. They got him situated and started giving him some gas to breathe. It would relax him until they could officially use the anesthesia. Elisa and I went back to say good luck 3-4 times each. It was a strange sensation, reaching down and kissing him in such a sterile hospital environment, my nostrils filled with the smell of strawberries (the chosen flavor). I was immediately reminded of my initial feelings about PCMC. A hospital with horror stories, wrapped up in balloons, bright colors, and "bubble gum". Sam's pending anesthesia, surrounded by the sweet smell of strawberries.
Sam looked over and stared into my eyes when I said my last "good luck, buddy!" and started to walk out. Those brilliant blue eyes were clearly wondering where daddy and mommy were headed, but he didn't cry as we walked down the hall. Soon enough, we were out of imaging and heading towards our first distraction while we waited for the 90 or so minutes. Coffee was first on the agenda. We had become so educated on PCMC that we knew about all of the coffee options. Our favorite was still "Brews on 3rd"...a quaint little "cart" on the 3rd floor. We got our coffees and headed down to the expanded gift shop of PCMC. I was amazed at how much construction and change had taken place since Sam had last been admitted. In our September/October visit and December visit, the front area of the hospital was in full construction. Now, they were just wrapping things up in creating an open, natural light entrance to the hospital. I appreciated the more natural and subtle design to the aquarium-ish entrance of the past. It felt more peaceful. More comforting.
We perused the gift shop and Elisa found some slipper socks...for her. At of all places, a children's hospital. My eyes fell to a small little bear with a yellow sweatshirt on that read "Get Well". She got her socks, Sam got a new friend. It seemed fitting, as the last time we were at PCMC, we ended up going onto Amazon to order a Lion King musical attachment to Sam's crib. Maybe we were destined to bring something home from each of these milestone experiences at PCMC. It felt good, though. It felt like a special thing to be able to give to him when we would see him next. Speaking of, we went back to the waiting room and sat around, wondering how much longer it would be. Your mind does some crazy things when the "prescribed" time passes. If a doctor says an hour, you start worrying at 61 minutes. We were told 90 minutes. We started worrying at about 90 and a half. Dr. Day came by, though, and gave us a quick update that they had needed a few more images, and then would be doing the echo. I honestly doubt anyone else would have even told us had Dr. Day not found us, yet again. Dr. Doom...the most thoughtful bunch of gray clouds that you could ever imagine.
Eventually, though, we did get the word that we could go back and see Sam. One of the worries heading into this was that Sam had to be intubated. That meant there was a risk of not being able to extubate him. And that meant a night at the hospital. So that was the first anxiety as we walked down the halls to the Imaging Recovery room. However, the minute we saw him, peacefully sleeping, we realized we didn't have an extubation to fear. Sam was without a tube in his mouth. He didn't even have a cannula - instead, they were doing blow by oxygen to keep his stats up. When we arrived, they were just bringing him out of the anesthesia...I was curious to see how he would respond this time. Last time, as I said in my last blog, ended up unknowingly being the first indication of Sam's eventual heart failure. I was curious what the experience would be this time.
And early on, I was quite worried. Sam was very cranky as he woke up, but didn't seem to be satisfied. We tried to feed him, but he'd cry. We tried to hold him, but he'd cry. He'd scream when we put him down. He was generally an unhappy baby. More concerning than his attitude was his numbers. His heart rate was fine, but he didn't seem to be able to hold his oxygen saturations (asleep or awake) without the oxygen. We got a brief guilt trip from the nurse that we hadn't brought oxygen with us. Color us used to Sam not being on oxygen. I started to think I'd have to run home and Sam would be brought back with oxygen during the day...something that hadn't happened since January. We kept giving him blow by oxygen, though, and tried to get Sam happy. While he wouldn't eat consistently, I was still convinced that he was frightfully hungry, so I suggested that Elisa try one more time and she suggested I grab the iPad, which conveniently had Frozen on it. And that was the trick we needed. With a movie and milk, Sam finally started to settle down. And he ate very well. Thankfully, the more he ate, the more calm he became. And sure enough, by the time we had hit the first real song in the movie, Sam was content.
The guilt trip nurse, however, redeemed herself in my eyes (I didn't appreciate the guilt...I have enough of that on my own considering it was my genetic condition that caused this whole thing!) when she came over and informed us that Sam (sitting at 98 oxygen saturation) had been without oxygen for the last 10 minutes. She turned it off when he finally settled to eat, and was now confident that Sam would be fine leaving, even without a cannula. We removed the IV (which improved Sam's mood), and about 15 minutes later, we were packing Sam up and getting ready to go home. What a difference from our November MRI. Yes, we went home after that one, but Sam had a crackle, was miserable, and was with cannula. This boy seemed content, had no oxygen, and even better, had zero crackling noise to be heard. We guessed that due to the intubation, they did industrial strength suckle of his nose and throat. He sounded better than he had in weeks. I jokingly said that if Nurse Over had just let us progress, Sam would have sounded better two weeks earlier.
Before we left, we got our third and final visit from Dr. Day. This time, he was with his nurse coordination (Linda...we love her) and he wanted to give us the echo results. I braced myself, but didn't need to. Dr. Day was, again, not so gloomy. He stated that the echo results looked "pretty good". The right side of Sam's heart was not as big as it previously had been, and the pressures looked okay too. Was he perfectly healthy? No, not yet, but the results were very encouraging. Dr. Day told us to go home and get Sam back off the oxygen, and we would find out what Brockmeyer and Tosky's plans were the next day. When we inquired about the PDA, Dr. Day stated that he was undecided on whether or not to fix it quite yet, but we would see. He even mentioned that we could start considering how to get Sam off of the Lasiks. Wow. That was a nice cherry on top of a stressful day.
And with that, we were back in the car and driving home. Two visits to PCMC for one MRI, but the echo results were encouraging and Sam seemed to be holding his own. Even better, about 15 minutes after we had gotten home, Sam was sitting on the floor, playing...as if he hadn't had a MRI at all. No crackling. No crankiness. No health concerns to be seen. At least, not on the surface. I smiled at the little man, as he made his playful noises and threw a pacifier a few feet away. And then I steeled myself for the bigger reality. For as good as Sam looked, and as smooth as the MRI ended up going, and as hopeful as the echo results seemed, the bigger appointment was just 24 hours away.
Brockmeyer and Tosky would be waiting. And Sam's next step in his journey would be written.
Wednesday, June 04, 2014
Saving Sam (Chapter 5.07): Assessing the over/under of reaction
I must admit that my feelings towards Sam's next MRI was very different than the one he had gone through the previous November. It was different for two reasons - memories of the last time and memories of my own time. Back in November, little did we know, Sam was already starting to deal with heart failure. We hadn't seen the full symptoms of this - he held his own on oxygen saturations, was seemingly happy, and was eating and gaining weight. But in retrospect, I think Sam's reaction to the MRI was a foreshadowing of what would happen the following month - and our second stay at PCMC. Sam reacted very poorly. It took hours for him to come out of the anesthesia and when he was out of it, he was miserable. He had developed a terrible gargling sound as he breathed...something we chalked up to being intubated and his throat being scratched up. From that point on, the gargle stuck around until Sam's heart failure reached critical mass. I wasn't overly excited to see him be put under again, and to wonder what child might emerge this time.
Second, and more selfish, I was reminded of my own very recent MRI experience - not one that I ever expected to go through but a direct result of our constant efforts to find out the genesis of Sam's difficulties. As we stepped, day by day, towards Sam's next MRI, I could feel myself tense up for the little one. I was half relieved he would be under anesthetic. I was half saddened that he'd be alone and strapped into the loud MRI machine, and that I would have to say "see you soon" to my little man. It wasn't all bad, though. Elisa and I, after 5 months of relative calm (since the embolization), were ready to get started with Sam's next steps. We wanted the oxygen to really be gone. We wanted to be told that Sam was on the mend, as opposed to just being out of the woods. We wanted a normal, happy, healthy little man. In our minds, and in the previous words of our doctors, that path included a summer embolization. We were emboldened by the fact that Dr. Tosky had hoped for 2 months before another procedure, and would be thrilled with six months. We'd be getting that six months. Sam had held his own, like we knew he had the strength to do.
For all the good, however, Elisa and I were back to having stomach aches and anxiety the night before his scheduled April MRI (April 23, to be exact). The plan was simple. a MRI on the Wednesday, and then a coordinated Neurology appointment where Dr. Brockmeyer and Tosky would come together to discuss next steps and schedule the next embolization. So it was a strange mix of anxiety, balanced with confidence. Fear, balanced with hope. Our psyches were having a personality disorders - how should we feel? What should we expect? This was all compounded by the fact that Sam was slowly recovering from the cold that had strapped the nasal cannula back onto his precious face. There was no way that they wouldn't do the MRI, right? After all, he only had a cough and a little throat noise that just was drainage and a snotty nose. We went in overconfident with the idea that Sam was ready and we would take the next step.
We arrived and checked in. I must say that of all the places in PCMC, one of the most profound to me is the Same Day surgery center. You hear stories. You can see some of the kids and know what they must be dealing with. Others show no signs of wear, and you wonder what surgery they will have to endure. They are all playing, blissfully unaware of what's to come. But you need only look into the faces of their parents to know what stress, worry, and fear look like. I imagine that they looked at me in the same way I looked at them. You notice the gray hairs, the wrinkles and worry lines etched on young faces that don't seem quite as young as they are. Parents with sick children wear stress on their bodies and in their faces. And yet, you feel no sense of judgment. You feel a bond. You understand the stress. You feel the worry. The fear is palpable. In all of my visits to Sam Day Surgery, I always feel the desire to walk around and tell them that I understand. Because I fear, in our own worrying minds, we feel alone. Yet we aren't. We're surrounded by understanding that you just don't find out there in day to day life.
After we got our insurance checked and sat back down, we were called back to start the examination procedures. From our past MRI, we knew the drill. Get his weight and measurements. Have a nurse's assistant do the once over. Meet some other nurse. Meet the anesthesiologist, and then head down to MRI for the terrible goodbye. Things progressed just as we expected. Sam got his weight (Yay! He was gaining - he had cleared 17 lbs!) and measurements. The nurse's assistant took blood pressure, oxygen saturation (97!), and heart rate. And then she left to get the "real" nurse...the one that would do the true once over, or at least provide their stamp of approval so we could move along.
And then we met today's nurse. For the sake of blog, I'll just call her Nurse Over. You'll see why shortly. I should have known that we had problems when Nurse Over (abbreviated as N.O.) walked in the room. She commented on Sam's congestion before she even started an exam. I sat quietly in the corner, hopeful that she was just overreacting to the sound. When you actually listened to it, the noise wasn't in his chest or his lungs. It was in his nose. We firmly believed that and expected to be moved right along into the MRI waiting room. But the longer her examination went, and the quieter, she got, I started wondering what was going through good old NO's head.
And then she said it - she didn't think Sam would be having his MRI today. She could hear crackling in his lungs, she said. And she was concerned. Sam happily stared up at her. He squealed. She mentioned that she wanted him to have a breathing treatment. I'm well aware of the Albuterol breathing treatments. From the last two colds, we had gotten very used to the provided breathing machine from Dr. Pete, and putting Sam through 20 minutes of torture (you know...the dreaded idea that an infant had to sit still for almost, but still less than, a whole half hour!). So I was actually pleasantly surprised that she was going this route. At least she wasn't completely overreacting. Sam would have a breathing treatment, we'd move along, and I'd thank Nurse Over for her...uhhh...lack of overreaction with Sam. Away she went, and soon enough, Sam was going through the industrial strength albuterol treatment. How do I get this version? It might have lasted 7 minutes. Sam didn't even have enough time to start complaining. Granted, he was probably trying to adjust to the icy blast of air at three times the velocity, but that's besides the point. 7 minutes passed. The treatment was over. And NO was back.
She was immediately happy with Sam's improved crackling. I even smiled at her. So maybe it wasn't an overreaction. Maybe she was reaching out...she understood that we were just one of those worn and tired parents that she saw the parade of in Same Day Surgery. Elisa asked if we would continue to progress for the day. I was hopeful. And then Nurse Over...well, she earned her blog nickname when she showed that she was the quintessential "over" in overreaction. The MRI would not happen today, if she had anything to say about it. She had arranged for the anesthesiologist to come and do his cursory review, but she didn't think it would be happening. I know what you're thinking. That's not an overreaction, right? No, it was the next thing she snuck in there. "If he didn't show improvement from the breathing treatment, I was going to consider admitting him!"
Ummm...what? Excuse me? Sam was literally smiling and playing with Elisa's hair when those words escaped her mouth. Admitting Sam? Round three of PCMC for a little crackling and a cold that was nearing its end? At that moment, I thought I'd be angry. I thought I would start roaring like the lion. And yet, all I could think about what the group of people still in the Same Day Surgery waiting room. Those that would get to experience NO. And then I felt the rush of fear wash over me when her words really started to resonate. Everything I had considered about Sam and his seemingly innocent "cold" was now in question. Did he need to be admitted? Were things more serious than we had imagined? Would I be delving into a new chapter that i had failed to foresee? Not only did I start feeling my anxiety grow, I remembered another day at PCMC...a day where we had gone in for a routine visit and ended up in the CICU. Nurse Over went to get the doctor. I calmed myself and tried to avoid the temptation to scream at her for scaring two parents that had been through so much.
I didn't have to wait long (or calm myself long, to be sure). The anesthesiologist had come into the room and did a quick scan of Sam. Where earlier I had found myself over confident, now I was bracing for bad news. I was worried that he would mention Sam being admitted as well. I was shocked by the 180 degree turn of this guy. He was confident that we should proceed. It seemed like Sam was getting better. The cold didn't seem overly burdensome. And, while we needed to be more careful with a case like Sam, he felt confident that Sam would be fine. He was the definite "under" of reaction. I think Nurse Over was underwhelmed.
In fact, I'm sure she wasn't. Because as he talked more of proceeding (he gave us the choice, but said we could move forward if we felt comfortable), she was back to listening to Sam. Back and forth, front to back. The stethoscope moved with every sentence out of the doctor's mouth. And then, as we were at the very moment of deciding whether to proceed (most likely, yes), she started talking again. "The crackling is back". I don't think his lungs sound great. You should listen again." The doctor complied with her request, and then as quickly as he had stated that we should proceed, he said he was hesitant to move forward because of the crackling. My head was spinning. I felt like I had reaction whiplash. NO put the stethoscope away. I wanted to take it from her and give her reason to be admitted to the hospital. I resisted...you know, for the sake of our family.
And before I knew it, I was on the phone with MRI, trying to reschedule Sam for 2 weeks out. I was calling our pediatrician to try to get an appointment today, to make sure Sam wasn't as serious as Nurse Over had made it sound. We were leaving Same Day Surgery without an MRI. And with a delay in resolution. We jumped in the car, and headed across the valley to the pediatrician's office. While Dr. Pete wasn't available, his nurse practitioner was She would confirm our fears or confirm my suspicions. Either Sam was in trouble or Nurse Over was the overreactor of the year. Elisa and I vented our worries as we drove. By the time we arrived, we were ready to do bad things to Nurse Over and hope and pray that we wouldn't be trekking back to PCMC for admittance.
Dr. Pete's Nurse Practitioner's name is Mary-Faith. I mean, can you get any more perfect than that? I'll keep myself from making countless puns with the word faith. They're going through my head. Too many of them. But I'll resist. And after all of the fun that NO had put us through, everything we thought about Sam before our visit to Same Day Surgery was immediately confirmed. Sam's crackling wasn't in his lungs. She didn't even hear much tightness. It was the congestion in his nose. He was fine...getting over a cold? Sure. But fine. She tried to tell us that caution is sometimes best, but I could tell she seemed a little surprised that Sam wasn't having his MRI today. She suggested we keep up on more Albuterol treatments. She said that a good two weeks of healing would mean that Sam wouldn't be denied his next MRI. We left with a strange mix of emotions. Grateful that Nurse Over was really overreacting (admit him?!). Sad that our progress to the next embolization and a healthier Sam had stalled. Happy that in 2 weeks, he'd be further past his cold. Sad that it wasn't right now.
We drove home and I started making plans to return to work. I'd planned on taking the two days off to take care of Sam appointments. Now, we were back to square one...all thanks to Nurse Over. And her overactive overreaction. Admit him? You've got to be kidding me. At least Dr. Doom know what's he's talking about when he's gloomy.
At that moment, I vowed to admit Nurse Over if she presided over Sam's check-in just two weeks later. After all, it was the least I could do after she had given us so much.
Second, and more selfish, I was reminded of my own very recent MRI experience - not one that I ever expected to go through but a direct result of our constant efforts to find out the genesis of Sam's difficulties. As we stepped, day by day, towards Sam's next MRI, I could feel myself tense up for the little one. I was half relieved he would be under anesthetic. I was half saddened that he'd be alone and strapped into the loud MRI machine, and that I would have to say "see you soon" to my little man. It wasn't all bad, though. Elisa and I, after 5 months of relative calm (since the embolization), were ready to get started with Sam's next steps. We wanted the oxygen to really be gone. We wanted to be told that Sam was on the mend, as opposed to just being out of the woods. We wanted a normal, happy, healthy little man. In our minds, and in the previous words of our doctors, that path included a summer embolization. We were emboldened by the fact that Dr. Tosky had hoped for 2 months before another procedure, and would be thrilled with six months. We'd be getting that six months. Sam had held his own, like we knew he had the strength to do.
For all the good, however, Elisa and I were back to having stomach aches and anxiety the night before his scheduled April MRI (April 23, to be exact). The plan was simple. a MRI on the Wednesday, and then a coordinated Neurology appointment where Dr. Brockmeyer and Tosky would come together to discuss next steps and schedule the next embolization. So it was a strange mix of anxiety, balanced with confidence. Fear, balanced with hope. Our psyches were having a personality disorders - how should we feel? What should we expect? This was all compounded by the fact that Sam was slowly recovering from the cold that had strapped the nasal cannula back onto his precious face. There was no way that they wouldn't do the MRI, right? After all, he only had a cough and a little throat noise that just was drainage and a snotty nose. We went in overconfident with the idea that Sam was ready and we would take the next step.
We arrived and checked in. I must say that of all the places in PCMC, one of the most profound to me is the Same Day surgery center. You hear stories. You can see some of the kids and know what they must be dealing with. Others show no signs of wear, and you wonder what surgery they will have to endure. They are all playing, blissfully unaware of what's to come. But you need only look into the faces of their parents to know what stress, worry, and fear look like. I imagine that they looked at me in the same way I looked at them. You notice the gray hairs, the wrinkles and worry lines etched on young faces that don't seem quite as young as they are. Parents with sick children wear stress on their bodies and in their faces. And yet, you feel no sense of judgment. You feel a bond. You understand the stress. You feel the worry. The fear is palpable. In all of my visits to Sam Day Surgery, I always feel the desire to walk around and tell them that I understand. Because I fear, in our own worrying minds, we feel alone. Yet we aren't. We're surrounded by understanding that you just don't find out there in day to day life.
After we got our insurance checked and sat back down, we were called back to start the examination procedures. From our past MRI, we knew the drill. Get his weight and measurements. Have a nurse's assistant do the once over. Meet some other nurse. Meet the anesthesiologist, and then head down to MRI for the terrible goodbye. Things progressed just as we expected. Sam got his weight (Yay! He was gaining - he had cleared 17 lbs!) and measurements. The nurse's assistant took blood pressure, oxygen saturation (97!), and heart rate. And then she left to get the "real" nurse...the one that would do the true once over, or at least provide their stamp of approval so we could move along.
And then we met today's nurse. For the sake of blog, I'll just call her Nurse Over. You'll see why shortly. I should have known that we had problems when Nurse Over (abbreviated as N.O.) walked in the room. She commented on Sam's congestion before she even started an exam. I sat quietly in the corner, hopeful that she was just overreacting to the sound. When you actually listened to it, the noise wasn't in his chest or his lungs. It was in his nose. We firmly believed that and expected to be moved right along into the MRI waiting room. But the longer her examination went, and the quieter, she got, I started wondering what was going through good old NO's head.
And then she said it - she didn't think Sam would be having his MRI today. She could hear crackling in his lungs, she said. And she was concerned. Sam happily stared up at her. He squealed. She mentioned that she wanted him to have a breathing treatment. I'm well aware of the Albuterol breathing treatments. From the last two colds, we had gotten very used to the provided breathing machine from Dr. Pete, and putting Sam through 20 minutes of torture (you know...the dreaded idea that an infant had to sit still for almost, but still less than, a whole half hour!). So I was actually pleasantly surprised that she was going this route. At least she wasn't completely overreacting. Sam would have a breathing treatment, we'd move along, and I'd thank Nurse Over for her...uhhh...lack of overreaction with Sam. Away she went, and soon enough, Sam was going through the industrial strength albuterol treatment. How do I get this version? It might have lasted 7 minutes. Sam didn't even have enough time to start complaining. Granted, he was probably trying to adjust to the icy blast of air at three times the velocity, but that's besides the point. 7 minutes passed. The treatment was over. And NO was back.
She was immediately happy with Sam's improved crackling. I even smiled at her. So maybe it wasn't an overreaction. Maybe she was reaching out...she understood that we were just one of those worn and tired parents that she saw the parade of in Same Day Surgery. Elisa asked if we would continue to progress for the day. I was hopeful. And then Nurse Over...well, she earned her blog nickname when she showed that she was the quintessential "over" in overreaction. The MRI would not happen today, if she had anything to say about it. She had arranged for the anesthesiologist to come and do his cursory review, but she didn't think it would be happening. I know what you're thinking. That's not an overreaction, right? No, it was the next thing she snuck in there. "If he didn't show improvement from the breathing treatment, I was going to consider admitting him!"
Ummm...what? Excuse me? Sam was literally smiling and playing with Elisa's hair when those words escaped her mouth. Admitting Sam? Round three of PCMC for a little crackling and a cold that was nearing its end? At that moment, I thought I'd be angry. I thought I would start roaring like the lion. And yet, all I could think about what the group of people still in the Same Day Surgery waiting room. Those that would get to experience NO. And then I felt the rush of fear wash over me when her words really started to resonate. Everything I had considered about Sam and his seemingly innocent "cold" was now in question. Did he need to be admitted? Were things more serious than we had imagined? Would I be delving into a new chapter that i had failed to foresee? Not only did I start feeling my anxiety grow, I remembered another day at PCMC...a day where we had gone in for a routine visit and ended up in the CICU. Nurse Over went to get the doctor. I calmed myself and tried to avoid the temptation to scream at her for scaring two parents that had been through so much.
I didn't have to wait long (or calm myself long, to be sure). The anesthesiologist had come into the room and did a quick scan of Sam. Where earlier I had found myself over confident, now I was bracing for bad news. I was worried that he would mention Sam being admitted as well. I was shocked by the 180 degree turn of this guy. He was confident that we should proceed. It seemed like Sam was getting better. The cold didn't seem overly burdensome. And, while we needed to be more careful with a case like Sam, he felt confident that Sam would be fine. He was the definite "under" of reaction. I think Nurse Over was underwhelmed.
In fact, I'm sure she wasn't. Because as he talked more of proceeding (he gave us the choice, but said we could move forward if we felt comfortable), she was back to listening to Sam. Back and forth, front to back. The stethoscope moved with every sentence out of the doctor's mouth. And then, as we were at the very moment of deciding whether to proceed (most likely, yes), she started talking again. "The crackling is back". I don't think his lungs sound great. You should listen again." The doctor complied with her request, and then as quickly as he had stated that we should proceed, he said he was hesitant to move forward because of the crackling. My head was spinning. I felt like I had reaction whiplash. NO put the stethoscope away. I wanted to take it from her and give her reason to be admitted to the hospital. I resisted...you know, for the sake of our family.
And before I knew it, I was on the phone with MRI, trying to reschedule Sam for 2 weeks out. I was calling our pediatrician to try to get an appointment today, to make sure Sam wasn't as serious as Nurse Over had made it sound. We were leaving Same Day Surgery without an MRI. And with a delay in resolution. We jumped in the car, and headed across the valley to the pediatrician's office. While Dr. Pete wasn't available, his nurse practitioner was She would confirm our fears or confirm my suspicions. Either Sam was in trouble or Nurse Over was the overreactor of the year. Elisa and I vented our worries as we drove. By the time we arrived, we were ready to do bad things to Nurse Over and hope and pray that we wouldn't be trekking back to PCMC for admittance.
Dr. Pete's Nurse Practitioner's name is Mary-Faith. I mean, can you get any more perfect than that? I'll keep myself from making countless puns with the word faith. They're going through my head. Too many of them. But I'll resist. And after all of the fun that NO had put us through, everything we thought about Sam before our visit to Same Day Surgery was immediately confirmed. Sam's crackling wasn't in his lungs. She didn't even hear much tightness. It was the congestion in his nose. He was fine...getting over a cold? Sure. But fine. She tried to tell us that caution is sometimes best, but I could tell she seemed a little surprised that Sam wasn't having his MRI today. She suggested we keep up on more Albuterol treatments. She said that a good two weeks of healing would mean that Sam wouldn't be denied his next MRI. We left with a strange mix of emotions. Grateful that Nurse Over was really overreacting (admit him?!). Sad that our progress to the next embolization and a healthier Sam had stalled. Happy that in 2 weeks, he'd be further past his cold. Sad that it wasn't right now.
We drove home and I started making plans to return to work. I'd planned on taking the two days off to take care of Sam appointments. Now, we were back to square one...all thanks to Nurse Over. And her overactive overreaction. Admit him? You've got to be kidding me. At least Dr. Doom know what's he's talking about when he's gloomy.
At that moment, I vowed to admit Nurse Over if she presided over Sam's check-in just two weeks later. After all, it was the least I could do after she had given us so much.
Tuesday, June 03, 2014
Saving Sam (Chapter 5.06): The air up here, the snot down there
I must admit that mapping out how I'm going to catch everyone up on our journey is a bit daunting. Due to some recent experiences with a greater circle of friends, I was reminded of my days at St. Mark's. I'm still amazed that I had so much to process on a daily basis that I was writing two blog posts a day. I know that Elisa says I talk too much, but that was extreme blogging. Of course, back then, progress was measured in hours. Soon, as Sam escaped his first hospital visits, the progress was measured in days. Sure, we had moments of going back to the hours (hello heart failure and embolization!). But after his initial procedure, we measured in weeks and not days. The pace of life and of Sam's journey reached the meaty part of the marathon. Where it's not impressive that you went 200, 300, 500 feet. Or past a 5K or a 10K. No, we've been on the nondescript 17th mile of the marathon, where you're still putting one foot in front of the other, but you've hit your stride and things don't tend to seem exciting until you're 3, 2, 1 miles from finishing the long journey. Then again, we've also been busy with our newfound measurement (when you go by weeks, you have to fill your time with other things!). I'll post extensive photo tours eventually (and by the end of my blog catch up, you'll even have a chance to see things in person), but over the course of the first 5 months of 2014, Elisa and I (with the tireless help of my parents) completely finished our basement, and then recently put in all of our gardens. To me, these activities have been the greatest sign of being in the midst of those long but uneventful miles of Sam's marathon. We were allowed to worry about other things, all while watching Sam head into his next big milestone - the next possible intervention and embolization.
When I left you last time, Sam's eating had increased exponentially as we came off of the heavy dose of Lasiks. We were running out of excuses to keep Sam on oxygen. I know, I know. I've talked for many blogs about wanting to get him off of the oxygen and cannula. But there is a definite "security blanket" feeling to the cannula. It's there to keep his stats up and to give you peace of mind when he's struggling (or seeming to struggle) with any breathing. The idea of taking Sam off of oxygen completely was dizzying and exciting. But it also meant Sam doing all of the work on his own, and the first 6 months of his life had taught us that Sam could only handle so much. But we also knew, as parents, that we needed to see how he could stand on his own. We needed to give him a chance. So we set a schedule. We'd get through the rest of the week (nothing like taking him off oxygen during the work week!), and we would head into what would surely be a sleepless night due to a lack of oxygen.
The time slipped by quickly, willing us to head into our next worry phase about Sam. I was prepared for it to be rough. We'd kind of gotten used to Sam's oxygen readings being in the 96-100 range on oxygen. The pulse oximeter literally never went off. We would only be woken up by Sam crying for milk, and then he'd be back asleep in no time. I also openly wondered if my body would let me sleep, fearful that something might happen without the oxygen and me being quietly and helplessly sleeping. But it had to be done. On a Friday evening, we got Sam ready for bed and left the oxygen cannula sitting on the oxygen tank. Sam's cannula free face glowed with giggles and a smile as I set him down. It was no commonplace, while he was awake, to see those same wonderful oxygen readings in the 96-99 range. Now, as I plugged him into the oximeter, I smiled at a good 98 reading and wondered what was in store for us.
I went back to our bedroom and clutched the video monitor (probably a little too tightly) in my hands. Our monitor has worked well in that it has two cameras. One for Sam, one for his oximeter. I kind of ignored the Sam camera. I set my sights on the oximeter and the heartbeat and oxygen saturation readings. Since it's been awhile, let me give you the quick rundown on what we were looking for. As Sam had come out of his embolization phase, we had gotten used to oxygen readings from 96-100. For a normal person, that's the normal oxygen range when we breathe. From a heart rate perspective, Sam would be in the 120-130 range while awake, and was known to dip into the 90-110 range while asleep. While I wasn't expecting us to stay with such high oxygen readings, I was hopeful that the heart rate would stay in a similar range...in many ways, that number scared me more when it was elevated. It told me his heart was working harder.
Sam took a few minutes to go to sleep, and as he drifted off, two things happened. Well, one thing happened and one thing didn't move. First, his oxygen readings began to drop. 96. 95. 94. 93. He seemed to level a bit there (from the doctor's perspective, we were hoping to stay at 90 or above). My worrying to me was the fact that he was starting to sleep, but his heart rate wasn't dropping. Firmly in the 130s, I worried about the pressure we were putting on him. With no change in heart rate, I went back to the oxygen readings. Now that I knew Sam was fully asleep, I wondered what we would experience. 92. 91. 90. We were at the baseline. Any further drops and we would have to consider turning the oxygen back on. 89. 88. And then the beeps. 87. Sam had triggered the oximeter alarms for the first time in months. It wasn't a sound I was really excited to be experiencing again. As it had been awhile, it immediately took me back to the night of Sam's heart failure and subsequent visit to PCMC. Yet, Sam didn't stay at 87. And didn't drop much further. He recovered back to the 90-92 range. And then would drop and kick off the alarms. This was the cycle for the next two hours. His heart rate still didn't adjust. It had moments of dropping into the 120s, but not much farther than that. Alarm. Recovery. Alarm. Recovery. I braced myself for a long night.
Funny enough, about 2 hours after he went to sleep, Sam stopped setting off the alarms. Sure, he had a couple dips when he rolled over, but Sam seemed to settle in in the 90-92 range for the rest of the night. His heart rate finally got consistently into the 120s, but I was slightly worried that he was stressed due to a lack of oxygen while sleeping. But he didn't get oxygen that night. I had to hand it to him...it wasn't an abject failure. He hung in there. He had shown strength. I shouldn't have been surprised. He had shown strength in some of the most tenuous moments of his short life. A little lack of oxygen was manageable. Still, I would head into the next evening with a sense of trepidation. I wasn't as worried about the beeps, even though they were annoying and still reminded me of the past. I was more concerned about the strain on me...would we be able to keep him off oxygen if I had a sense that his heart was dealing with greater strain each night?
The evening progressed quite similarly to the night before. He went to sleep at 97. He faded from an oxygen saturation level into the low 90s...eventually setting the alarms off. I did notice that the beeping seemed to lessen a bit earlier than the previous night. Even better was his heart rate. Where he had held in the 120-130 range the night before, today he was starting in the 120s. And he had moments in the 110s. I was encouraged. I went to sleep, hopeful that I would only wake to some minor beeping incidents...
I awoke sometime in the middle of the night, full of panic. Hours had to have passed, and I hadn't been glued to the monitor. I clicked the home button of my iPhone and started disbelievingly at the time. 3:05. No sound from Sam. No beeping. I grabbed the monitor, afraid of what I'd see. Sure enough, there was Sam, sleeping away. I could see he was breathing. Then, I switched the screen over to his pulse oximeter. It took a few minutes to process what I was seeing. Oxygen saturation at 95. Heart rate at 100. Could that be right? Those were numbers I was used to when Sam was on oxygen at night. I sat in silence and watched. No change to his numbers. Soundly sleeping. Sam was off oxygen. And not only was he holding his own, he was starting to regulate. The night before was full of anxiety. And sometime in the middle of night two, the light switch went on. And Sam realized that he could do this on his own. And he did.
Elisa and I were thrilled. Sam off oxygen. I remember hoping for that when he was trying to get out of St. Mark's. Here we stood, months after his embolization. Months removed from getting him off oxygen during the day. And for the first time since Sam graced our home, the oxygen tank sat unused in the corner. I couldn't believe it. Sam was getting better. We lived in bliss for about a week. Nothing was in our way. Everything seemed possible. Sure, Sam was still retracting, but the progress we had made was hard to wrap our heads around. The pulse oximeter was still attached to Sam's foot at night...while we removed one umbilical cord, the bigger one (that told us he still had a heart beat, and was breathing) was nowhere near being removed. But we were on our way. Until...we realized that we lived with two other boys. Boys that went to school and preschool every day. Boys that came back with sniffles.
Before Sam, we would hate to see Lukas or Miles get a cold. We knew that eventually the other would get it, and then Elisa or I would eventually get slapped with it. Thankfully, we never seemed to all get it at the same time, but we knew that things would be rough for a couple weeks. With Sam's arrival, however, a cold meant war. And we would go into the routine of doctor masks, OCD hand washing, and keeping the boys at bay as if they had the bubonic plague, not a common cold. And here came a cold. We tried so hard to keep Sam from getting colds, because they just taxed his system in a way that a normal, healthy baby wouldn't deal with. So we went into our routine, trying to prevent Sam from getting a cold. Things were going so well, this wasn't what we needed.
Of course, the minute we started going OCD with our cleanliness, we were already a couple days too late. Sam had the cold. We just didn't know it yet. Two days later, however, it was very clear. The runny nose. The dry, hacking cough. Sam was just on the cusp of sick with a cold. And I, of course, showed impeccable timing. You see, a couple weeks before, it was okay that I found out about a coming work trip. And sure, Elisa would be under tremendous strain, but she could do it. I had faith. I was slightly worried, though. Usually, my work trips consisted of a 1-3 day excursion. This trip would have me leaving on a Sunday and not returning until Friday. Again, a couple weeks before, I was just dealing with the guilt of putting Elisa through the hell of three kids. As the trip inched closer, it was clear that Elisa would now be dealing with three sick kids. However, the trip was a must. I had to go. And Elisa would have to go it alone. I felt sick...no, not the physical kind. I just felt horrible that I was leaving her on her own. Little did I know that Sam would make it even harder.
I left on a Sunday. That night, Sam really got worse. He stopped sleeping. He began setting off the pulse oximeter. It was a veritable disaster. First, the sleep. Sam had become a good sleeper. We would put him down and he generally would wake up between 3-4 to eat, falling back asleep until 6. Sure, he wasn't a perfect sleeper. Sometimes, he'd wake up twice. Other times, he would wake up early (1-2). But we were semi consistent. On my first absent night, Sam was waking up every hour. And crying...the out of control, cannot be consoled crying. Elisa and I texted back and forth as her worries built and my guilt mounted. Even worse, the pulse oximeter was back to its beeping. Sam would have moments in the high 80s, and his heart rate would stay high. It was like Sam had completed a perfect 180, regressing with each sniffle of the cold. No matter what Elisa tried, Sam kept waking up. And kept setting off the monitor.
After a horrible night and a rough day, Elisa was faced with evening #2, worried about what Sam would have in store. Sure enough, the evening progressed just as the previous one had. Beeping monitors. Waking up every hour (or less). So Elisa made a decision. Sam seemed to be under stress. It was time to bring back the oxygen. I can only imagine how difficult that decision was for her. We had come so far in 2 weeks, and with every turn of the tank handle, we were going back to Sam being sick and in need of supportive oxygen. Our dreams of a tank free life had vanished. Elisa hoped it would help Sam settle and sleep. I could only sit in my hotel room and wonder if this is what our life was going to be from here on out...or at least until our next embolization. Thankfully, the oxygen helped a bit. Sam's oxygen saturations had improved to the point that the monitor wasn't incessantly beeping, although Sam's sleep patterns were still very disturbed. Elisa started feeling the cold. She was trying to keep the other kids feeling okay, as they were getting over the colds. It was too much for one person, but she, once again, proved her strength by surviving the week. On her own. I was impressed.
And like that, Sam had come completely off oxygen, only to return right two it. For two weeks, we saw an oxygen free Sam. Two weeks later, we saw a sick Sam, not yet ready to fight little bugs on his own. He needed help. He needed a boost. While him coming off oxygen had been such an encouraging step, the regression put a level of fear into us as we stared at the next big thing. After months of "hanging out", and measuring Sam's progress in weeks and not hours, we were a week away from Sam's next milestone. A new MRI and the start of our march to his next embolization.
We could only hope that Sam's new reliance on oxygen didn't mean a greater need for intervention than we had expected.
When I left you last time, Sam's eating had increased exponentially as we came off of the heavy dose of Lasiks. We were running out of excuses to keep Sam on oxygen. I know, I know. I've talked for many blogs about wanting to get him off of the oxygen and cannula. But there is a definite "security blanket" feeling to the cannula. It's there to keep his stats up and to give you peace of mind when he's struggling (or seeming to struggle) with any breathing. The idea of taking Sam off of oxygen completely was dizzying and exciting. But it also meant Sam doing all of the work on his own, and the first 6 months of his life had taught us that Sam could only handle so much. But we also knew, as parents, that we needed to see how he could stand on his own. We needed to give him a chance. So we set a schedule. We'd get through the rest of the week (nothing like taking him off oxygen during the work week!), and we would head into what would surely be a sleepless night due to a lack of oxygen.
The time slipped by quickly, willing us to head into our next worry phase about Sam. I was prepared for it to be rough. We'd kind of gotten used to Sam's oxygen readings being in the 96-100 range on oxygen. The pulse oximeter literally never went off. We would only be woken up by Sam crying for milk, and then he'd be back asleep in no time. I also openly wondered if my body would let me sleep, fearful that something might happen without the oxygen and me being quietly and helplessly sleeping. But it had to be done. On a Friday evening, we got Sam ready for bed and left the oxygen cannula sitting on the oxygen tank. Sam's cannula free face glowed with giggles and a smile as I set him down. It was no commonplace, while he was awake, to see those same wonderful oxygen readings in the 96-99 range. Now, as I plugged him into the oximeter, I smiled at a good 98 reading and wondered what was in store for us.
I went back to our bedroom and clutched the video monitor (probably a little too tightly) in my hands. Our monitor has worked well in that it has two cameras. One for Sam, one for his oximeter. I kind of ignored the Sam camera. I set my sights on the oximeter and the heartbeat and oxygen saturation readings. Since it's been awhile, let me give you the quick rundown on what we were looking for. As Sam had come out of his embolization phase, we had gotten used to oxygen readings from 96-100. For a normal person, that's the normal oxygen range when we breathe. From a heart rate perspective, Sam would be in the 120-130 range while awake, and was known to dip into the 90-110 range while asleep. While I wasn't expecting us to stay with such high oxygen readings, I was hopeful that the heart rate would stay in a similar range...in many ways, that number scared me more when it was elevated. It told me his heart was working harder.
Sam took a few minutes to go to sleep, and as he drifted off, two things happened. Well, one thing happened and one thing didn't move. First, his oxygen readings began to drop. 96. 95. 94. 93. He seemed to level a bit there (from the doctor's perspective, we were hoping to stay at 90 or above). My worrying to me was the fact that he was starting to sleep, but his heart rate wasn't dropping. Firmly in the 130s, I worried about the pressure we were putting on him. With no change in heart rate, I went back to the oxygen readings. Now that I knew Sam was fully asleep, I wondered what we would experience. 92. 91. 90. We were at the baseline. Any further drops and we would have to consider turning the oxygen back on. 89. 88. And then the beeps. 87. Sam had triggered the oximeter alarms for the first time in months. It wasn't a sound I was really excited to be experiencing again. As it had been awhile, it immediately took me back to the night of Sam's heart failure and subsequent visit to PCMC. Yet, Sam didn't stay at 87. And didn't drop much further. He recovered back to the 90-92 range. And then would drop and kick off the alarms. This was the cycle for the next two hours. His heart rate still didn't adjust. It had moments of dropping into the 120s, but not much farther than that. Alarm. Recovery. Alarm. Recovery. I braced myself for a long night.
Funny enough, about 2 hours after he went to sleep, Sam stopped setting off the alarms. Sure, he had a couple dips when he rolled over, but Sam seemed to settle in in the 90-92 range for the rest of the night. His heart rate finally got consistently into the 120s, but I was slightly worried that he was stressed due to a lack of oxygen while sleeping. But he didn't get oxygen that night. I had to hand it to him...it wasn't an abject failure. He hung in there. He had shown strength. I shouldn't have been surprised. He had shown strength in some of the most tenuous moments of his short life. A little lack of oxygen was manageable. Still, I would head into the next evening with a sense of trepidation. I wasn't as worried about the beeps, even though they were annoying and still reminded me of the past. I was more concerned about the strain on me...would we be able to keep him off oxygen if I had a sense that his heart was dealing with greater strain each night?
The evening progressed quite similarly to the night before. He went to sleep at 97. He faded from an oxygen saturation level into the low 90s...eventually setting the alarms off. I did notice that the beeping seemed to lessen a bit earlier than the previous night. Even better was his heart rate. Where he had held in the 120-130 range the night before, today he was starting in the 120s. And he had moments in the 110s. I was encouraged. I went to sleep, hopeful that I would only wake to some minor beeping incidents...
I awoke sometime in the middle of the night, full of panic. Hours had to have passed, and I hadn't been glued to the monitor. I clicked the home button of my iPhone and started disbelievingly at the time. 3:05. No sound from Sam. No beeping. I grabbed the monitor, afraid of what I'd see. Sure enough, there was Sam, sleeping away. I could see he was breathing. Then, I switched the screen over to his pulse oximeter. It took a few minutes to process what I was seeing. Oxygen saturation at 95. Heart rate at 100. Could that be right? Those were numbers I was used to when Sam was on oxygen at night. I sat in silence and watched. No change to his numbers. Soundly sleeping. Sam was off oxygen. And not only was he holding his own, he was starting to regulate. The night before was full of anxiety. And sometime in the middle of night two, the light switch went on. And Sam realized that he could do this on his own. And he did.
Elisa and I were thrilled. Sam off oxygen. I remember hoping for that when he was trying to get out of St. Mark's. Here we stood, months after his embolization. Months removed from getting him off oxygen during the day. And for the first time since Sam graced our home, the oxygen tank sat unused in the corner. I couldn't believe it. Sam was getting better. We lived in bliss for about a week. Nothing was in our way. Everything seemed possible. Sure, Sam was still retracting, but the progress we had made was hard to wrap our heads around. The pulse oximeter was still attached to Sam's foot at night...while we removed one umbilical cord, the bigger one (that told us he still had a heart beat, and was breathing) was nowhere near being removed. But we were on our way. Until...we realized that we lived with two other boys. Boys that went to school and preschool every day. Boys that came back with sniffles.
Before Sam, we would hate to see Lukas or Miles get a cold. We knew that eventually the other would get it, and then Elisa or I would eventually get slapped with it. Thankfully, we never seemed to all get it at the same time, but we knew that things would be rough for a couple weeks. With Sam's arrival, however, a cold meant war. And we would go into the routine of doctor masks, OCD hand washing, and keeping the boys at bay as if they had the bubonic plague, not a common cold. And here came a cold. We tried so hard to keep Sam from getting colds, because they just taxed his system in a way that a normal, healthy baby wouldn't deal with. So we went into our routine, trying to prevent Sam from getting a cold. Things were going so well, this wasn't what we needed.
Of course, the minute we started going OCD with our cleanliness, we were already a couple days too late. Sam had the cold. We just didn't know it yet. Two days later, however, it was very clear. The runny nose. The dry, hacking cough. Sam was just on the cusp of sick with a cold. And I, of course, showed impeccable timing. You see, a couple weeks before, it was okay that I found out about a coming work trip. And sure, Elisa would be under tremendous strain, but she could do it. I had faith. I was slightly worried, though. Usually, my work trips consisted of a 1-3 day excursion. This trip would have me leaving on a Sunday and not returning until Friday. Again, a couple weeks before, I was just dealing with the guilt of putting Elisa through the hell of three kids. As the trip inched closer, it was clear that Elisa would now be dealing with three sick kids. However, the trip was a must. I had to go. And Elisa would have to go it alone. I felt sick...no, not the physical kind. I just felt horrible that I was leaving her on her own. Little did I know that Sam would make it even harder.
I left on a Sunday. That night, Sam really got worse. He stopped sleeping. He began setting off the pulse oximeter. It was a veritable disaster. First, the sleep. Sam had become a good sleeper. We would put him down and he generally would wake up between 3-4 to eat, falling back asleep until 6. Sure, he wasn't a perfect sleeper. Sometimes, he'd wake up twice. Other times, he would wake up early (1-2). But we were semi consistent. On my first absent night, Sam was waking up every hour. And crying...the out of control, cannot be consoled crying. Elisa and I texted back and forth as her worries built and my guilt mounted. Even worse, the pulse oximeter was back to its beeping. Sam would have moments in the high 80s, and his heart rate would stay high. It was like Sam had completed a perfect 180, regressing with each sniffle of the cold. No matter what Elisa tried, Sam kept waking up. And kept setting off the monitor.
After a horrible night and a rough day, Elisa was faced with evening #2, worried about what Sam would have in store. Sure enough, the evening progressed just as the previous one had. Beeping monitors. Waking up every hour (or less). So Elisa made a decision. Sam seemed to be under stress. It was time to bring back the oxygen. I can only imagine how difficult that decision was for her. We had come so far in 2 weeks, and with every turn of the tank handle, we were going back to Sam being sick and in need of supportive oxygen. Our dreams of a tank free life had vanished. Elisa hoped it would help Sam settle and sleep. I could only sit in my hotel room and wonder if this is what our life was going to be from here on out...or at least until our next embolization. Thankfully, the oxygen helped a bit. Sam's oxygen saturations had improved to the point that the monitor wasn't incessantly beeping, although Sam's sleep patterns were still very disturbed. Elisa started feeling the cold. She was trying to keep the other kids feeling okay, as they were getting over the colds. It was too much for one person, but she, once again, proved her strength by surviving the week. On her own. I was impressed.
And like that, Sam had come completely off oxygen, only to return right two it. For two weeks, we saw an oxygen free Sam. Two weeks later, we saw a sick Sam, not yet ready to fight little bugs on his own. He needed help. He needed a boost. While him coming off oxygen had been such an encouraging step, the regression put a level of fear into us as we stared at the next big thing. After months of "hanging out", and measuring Sam's progress in weeks and not hours, we were a week away from Sam's next milestone. A new MRI and the start of our march to his next embolization.
We could only hope that Sam's new reliance on oxygen didn't mean a greater need for intervention than we had expected.
Wednesday, April 09, 2014
Saving Sam (Chapter 5.05): This isn't baby Weight Watchers
When you're the parent of a sick kid, you have a whole host of worries that are unique to your situation (although very common in these circles, I would assume). I look back on Lukas and Miles growing up and almost laugh that we were so focused on Luke's development, always comparing his progression to the next child. We would stew over things if another child near (or God forbid, younger!) Lukas's age was doing something faster or better than he was. So of course, in lockstep with our neuroses, Lukas decided to just take his time speaking. We were worried incessantly, wondering if his "de de" to everything would actually materialize into words. And then, just like his Daddy had when he was a baby, Lukas started talking in sentences. Today, there are times that I look back to his "de de" days with fondness. But, it's fair to say that we worried about Lukas' development more than anything else.
Miles was unique as well. With the second child, every worry about development went out the window. That's what happens when you have a second. You don't have time to worry about which week it is, and what Baby Center is telling you the baby should be doing. It's no longer cute. It's just extra stuff that makes the baby harder. You start hoping that your child is going to be the silent one until he's two. You secretly hope that he'll fully reject any idea of being mobile, sticking to sitting up and playing quietly by himself. Where you were the militant Mom and Dad with the first, living your life as though a missed nap at home might result in the fall of the human race, or the quickening of global warming, with the second, you come to the realization that everything...literally everything...can be done mobile. He can nap in the car, on your lap, in the stroller, or on the stomach of a random homeless man if you happen to be at Pioneer Park. Breastfeeding really can take place anywhere, provided you have a large enough cover and carry your La Leche League membership card ready to flash as though you were the Milk Police. Stop in the name of the booby!
Sam, on the other hand, rocked my parenting world. For as confident as I had become about raising children, Sam cut me off at the knees. He made me question absolutely everything, from what normal baby poop looks like, what appropriate breathing is, how to introduce solids, or whether his eyes look good, puffy, or abnormally large. I've fretted about the size of his hands, his head, and feet. I've worried about his heart rate, oxygen saturation, and breathing rate. I've laid awake concerned about his developmental steps. But most of all, having a sick and special kid gives you some basic worries that you really never leave. They are with you at all times, in all ways. Weight, heart rate, and oxygen saturation. If you ever need a calling card to really scare the shit out of you when you have a sick kid, just stick to those. They never disappoint. Every night that Sam has been in our home, he's been attached to a pulse oximeter at night. I can tell you that a heart rate under 100 gives me peace, while a resting heart rate above 120 gives me pause. Over 130 and I start having serious panic attacks about an impending heart failure episode. Oxygen saturation is quite similar, if on a smaller scale. While on oxygen 98-100 is my safe zone. 97 puts me on laser mode, always staring to make sure we don't drop below. 96 is very nearly a serious problem, and when you get into 93-95, you start looking up oxygen saturation articles on the internet.
Weight, however, is a different kind of scary. It's a slow drip, as opposed to an immediate shot in the arm like the heart rate and oxygen saturation readings. You resort to silly tactics to get a reading, even though you know the flaw in your logic. For me, I would stand on our (not great) weight scale, then stand on it while holding Sam, and do quick math. It gave me either a level of comfort or a cause for worry. And while he had been a champ with weight before the heart failure episode, weight gain had seemed harder to come by for little Sam. And while he seemed to be thriving in some ways (he had come off of oxygen, he seemed to be sleeping a bit better, and wasn't a terrible eater as long as the Milk Police were providing (don't mention the bottle)), there were some concerning things that we saw as January turned to February. He wasn't gaining weight...not much, at least, and with each visit to Dr. Pete's we saw a slight drop in his overall weight percentages. There were days where his breathing seemed to be a little more difficult, and we would rush over to put him onto the pulse oximeter during the day just to make sure that his saturations were holding well off of oxygen (they were).
We had also delved into the world of cereal. Rice cereal always seemed to be the safest for the other kids (again, proof that Sam was not our typical child), but it was a rough go with our littlest. He didn't seem all too interested in it, and 2 days after we started, he seemed more and more miserable. It was clear that he was having some sort of stomach and or intestinal reaction to it. It made him miserable, us miserable, and again increased the worry quotient exponentially. Something just seemed off. Sam was progressing, but it was fair to say that the curve of his growth was rocky and jagged. The smooth parts - they couldn't be found. It was made worse by the fact that Sam wasn't sleeping, so neither were we. It was a strange confluence of emotions. So relieved and thrilled that Sam was clearly not exhibiting heart failure. Worried and concerned that his progression had not been a vertical line up.
As a result, we considered everything. What was the right combination of food? Should he just be getting breast milk? Was he eating enough? Was it possible that he was breathing harder, and that was putting greater pressure on his body that we were even aware of? It was only after weeks of worrying that my thoughts turned to his medications. I wasn't suspect of the Zantac, or Sildenafil. The purpose of those medications were to control acid reflux and to open up the blood vessels to take pressure off of Sam's heart. I did start to wonder about the Lasiks, though. That was designed to shed fluids away from the heart and lungs during heart failure, and I knew that was why he had been kept on it long after. But I also knew that adults used diuretics as a weight loss option. And let's be honest. This wasn't Baby Weight Watchers. We wanted weight on the boy, not off. I started wondering if the pull of fluids out of Sam was causing his body to really work harder..and to hold onto every ounce of nutrition it could.
To say that my theory landed with a collective thud in the medical community was an understatement. It started with Dr. Pete. While I love that doctor, when we mentioned the Lasiks, he stated that there was no medical proof that it would affect Sam's eating and disposition. At least I learned from my time at St. Mark's that the lion should still prowl beyond the first resistance provided. I pushed on Dr. Pete the next time we were in the office, and was told again that it was just Sam working through and adjusting to a life without heart failure. We were even told that Sam was just needy...he'd admittedly been through a lot and he was going to cling a bit more. I called and left messages for Dr. Day and his nurse Linda. While she was further hesitant to see the connection between the diuretic and Sam's eating/sleeping/disposition, she was at least willing to talk to Dr. Day. When she came back, we were offered guarded pessimism. They both did not believe there was a tie to what we were seeing, but after conversations with both Elisa and myself, they agreed to let us take Sam down to one dose of Lasiks a day. You could tell they were worried about the impact - they didn't ask to be told if he started eating better. They just wanted to know if Sam's hands and feet started to swell without the fluids being pulled off.
The next day, we gave Sam a single dose of Lasiks. No evening dose. That day, he was still cranky. Still not eating well. Still not sleeping like a champ...
But the next day, like the sun peaking through the clouds after a ferocious rain storm, Sam's sunny disposition started to make a more lasting visit. It really was like the flip of a switch. Sam ate better than he had in months. He didn't seem as cranky. And while his sleeping was still a serious problem, he didn't seem to be nearly as pained and uncomfortable when trying to get some shut eye. The days turned into weeks, and Sam seemed like a different baby. Happy, talkative, and not nearly as agitated. Where meal times with Elisa had been a screaming fit that only seemed to be quelled by tricking Sam into thinking he was sucking on a pacifier, now he ate ferociously. We reintroduced cereal (skipping the rice in favor of oatmeal), and Sam became a little bird, opening his mouth for every single bite. All Elisa could say was how great Sam was doing. All I could think was how right we might have been when we considered what a diuretic (used for weight loss in adults) could affect a child that was desperately trying to grow. It's not that I was arrogantly thinking that I had outsmarted medical professionals. It just made me realize that a mother or father's intuition, at times, could be worth a medical degree when those with one remained pessimistic.
That's not to say that it was all roses. Sam's sleeping patterns and habits were starting to wear on two parents that desperately needed sleep (although they hadn't properly done so for over 6 months). Those habits would be coming to a head as we headed into Sam's 6 month well baby exam, and started to see a little baby that might have been behind on weight gain, but was finally gaining again.
That laid in front of us. That, and the pesky little problem that Sam was still on oxygen every night. Freed from the cord and the canister during the days, the change in Sam's disposition and the slow march to Sam's next possible embolization ignited a small flame inside of his parent's brains. Intuition was starting to kick in, and Elisa and I both started to silently (and then not so silently between us) mention what the world might look like without a cannula on Sam's face...at all.
After all, if we could take him off of Baby Weight Watchers and see such a sudden change in his disposition, it begged the question...what would a little less oxygen do to kick start Sam's healing in new and different ways? Maybe it was time to ask.
Until next time.
Miles was unique as well. With the second child, every worry about development went out the window. That's what happens when you have a second. You don't have time to worry about which week it is, and what Baby Center is telling you the baby should be doing. It's no longer cute. It's just extra stuff that makes the baby harder. You start hoping that your child is going to be the silent one until he's two. You secretly hope that he'll fully reject any idea of being mobile, sticking to sitting up and playing quietly by himself. Where you were the militant Mom and Dad with the first, living your life as though a missed nap at home might result in the fall of the human race, or the quickening of global warming, with the second, you come to the realization that everything...literally everything...can be done mobile. He can nap in the car, on your lap, in the stroller, or on the stomach of a random homeless man if you happen to be at Pioneer Park. Breastfeeding really can take place anywhere, provided you have a large enough cover and carry your La Leche League membership card ready to flash as though you were the Milk Police. Stop in the name of the booby!
Sam, on the other hand, rocked my parenting world. For as confident as I had become about raising children, Sam cut me off at the knees. He made me question absolutely everything, from what normal baby poop looks like, what appropriate breathing is, how to introduce solids, or whether his eyes look good, puffy, or abnormally large. I've fretted about the size of his hands, his head, and feet. I've worried about his heart rate, oxygen saturation, and breathing rate. I've laid awake concerned about his developmental steps. But most of all, having a sick and special kid gives you some basic worries that you really never leave. They are with you at all times, in all ways. Weight, heart rate, and oxygen saturation. If you ever need a calling card to really scare the shit out of you when you have a sick kid, just stick to those. They never disappoint. Every night that Sam has been in our home, he's been attached to a pulse oximeter at night. I can tell you that a heart rate under 100 gives me peace, while a resting heart rate above 120 gives me pause. Over 130 and I start having serious panic attacks about an impending heart failure episode. Oxygen saturation is quite similar, if on a smaller scale. While on oxygen 98-100 is my safe zone. 97 puts me on laser mode, always staring to make sure we don't drop below. 96 is very nearly a serious problem, and when you get into 93-95, you start looking up oxygen saturation articles on the internet.
Weight, however, is a different kind of scary. It's a slow drip, as opposed to an immediate shot in the arm like the heart rate and oxygen saturation readings. You resort to silly tactics to get a reading, even though you know the flaw in your logic. For me, I would stand on our (not great) weight scale, then stand on it while holding Sam, and do quick math. It gave me either a level of comfort or a cause for worry. And while he had been a champ with weight before the heart failure episode, weight gain had seemed harder to come by for little Sam. And while he seemed to be thriving in some ways (he had come off of oxygen, he seemed to be sleeping a bit better, and wasn't a terrible eater as long as the Milk Police were providing (don't mention the bottle)), there were some concerning things that we saw as January turned to February. He wasn't gaining weight...not much, at least, and with each visit to Dr. Pete's we saw a slight drop in his overall weight percentages. There were days where his breathing seemed to be a little more difficult, and we would rush over to put him onto the pulse oximeter during the day just to make sure that his saturations were holding well off of oxygen (they were).
We had also delved into the world of cereal. Rice cereal always seemed to be the safest for the other kids (again, proof that Sam was not our typical child), but it was a rough go with our littlest. He didn't seem all too interested in it, and 2 days after we started, he seemed more and more miserable. It was clear that he was having some sort of stomach and or intestinal reaction to it. It made him miserable, us miserable, and again increased the worry quotient exponentially. Something just seemed off. Sam was progressing, but it was fair to say that the curve of his growth was rocky and jagged. The smooth parts - they couldn't be found. It was made worse by the fact that Sam wasn't sleeping, so neither were we. It was a strange confluence of emotions. So relieved and thrilled that Sam was clearly not exhibiting heart failure. Worried and concerned that his progression had not been a vertical line up.
As a result, we considered everything. What was the right combination of food? Should he just be getting breast milk? Was he eating enough? Was it possible that he was breathing harder, and that was putting greater pressure on his body that we were even aware of? It was only after weeks of worrying that my thoughts turned to his medications. I wasn't suspect of the Zantac, or Sildenafil. The purpose of those medications were to control acid reflux and to open up the blood vessels to take pressure off of Sam's heart. I did start to wonder about the Lasiks, though. That was designed to shed fluids away from the heart and lungs during heart failure, and I knew that was why he had been kept on it long after. But I also knew that adults used diuretics as a weight loss option. And let's be honest. This wasn't Baby Weight Watchers. We wanted weight on the boy, not off. I started wondering if the pull of fluids out of Sam was causing his body to really work harder..and to hold onto every ounce of nutrition it could.
To say that my theory landed with a collective thud in the medical community was an understatement. It started with Dr. Pete. While I love that doctor, when we mentioned the Lasiks, he stated that there was no medical proof that it would affect Sam's eating and disposition. At least I learned from my time at St. Mark's that the lion should still prowl beyond the first resistance provided. I pushed on Dr. Pete the next time we were in the office, and was told again that it was just Sam working through and adjusting to a life without heart failure. We were even told that Sam was just needy...he'd admittedly been through a lot and he was going to cling a bit more. I called and left messages for Dr. Day and his nurse Linda. While she was further hesitant to see the connection between the diuretic and Sam's eating/sleeping/disposition, she was at least willing to talk to Dr. Day. When she came back, we were offered guarded pessimism. They both did not believe there was a tie to what we were seeing, but after conversations with both Elisa and myself, they agreed to let us take Sam down to one dose of Lasiks a day. You could tell they were worried about the impact - they didn't ask to be told if he started eating better. They just wanted to know if Sam's hands and feet started to swell without the fluids being pulled off.
The next day, we gave Sam a single dose of Lasiks. No evening dose. That day, he was still cranky. Still not eating well. Still not sleeping like a champ...
But the next day, like the sun peaking through the clouds after a ferocious rain storm, Sam's sunny disposition started to make a more lasting visit. It really was like the flip of a switch. Sam ate better than he had in months. He didn't seem as cranky. And while his sleeping was still a serious problem, he didn't seem to be nearly as pained and uncomfortable when trying to get some shut eye. The days turned into weeks, and Sam seemed like a different baby. Happy, talkative, and not nearly as agitated. Where meal times with Elisa had been a screaming fit that only seemed to be quelled by tricking Sam into thinking he was sucking on a pacifier, now he ate ferociously. We reintroduced cereal (skipping the rice in favor of oatmeal), and Sam became a little bird, opening his mouth for every single bite. All Elisa could say was how great Sam was doing. All I could think was how right we might have been when we considered what a diuretic (used for weight loss in adults) could affect a child that was desperately trying to grow. It's not that I was arrogantly thinking that I had outsmarted medical professionals. It just made me realize that a mother or father's intuition, at times, could be worth a medical degree when those with one remained pessimistic.
That's not to say that it was all roses. Sam's sleeping patterns and habits were starting to wear on two parents that desperately needed sleep (although they hadn't properly done so for over 6 months). Those habits would be coming to a head as we headed into Sam's 6 month well baby exam, and started to see a little baby that might have been behind on weight gain, but was finally gaining again.
That laid in front of us. That, and the pesky little problem that Sam was still on oxygen every night. Freed from the cord and the canister during the days, the change in Sam's disposition and the slow march to Sam's next possible embolization ignited a small flame inside of his parent's brains. Intuition was starting to kick in, and Elisa and I both started to silently (and then not so silently between us) mention what the world might look like without a cannula on Sam's face...at all.
After all, if we could take him off of Baby Weight Watchers and see such a sudden change in his disposition, it begged the question...what would a little less oxygen do to kick start Sam's healing in new and different ways? Maybe it was time to ask.
Until next time.
Subscribe to:
Posts (Atom)