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.
Wednesday, April 09, 2014
Monday, April 07, 2014
Saving Sam (Chapter 5.04): Claustrophobia
I don't think I would be a unique male in telling you that in my adult life, I can probably count the times I have openly shed tears on my fingers. From an early age, it is engrained into males to keep the emotions in check, whether it be to hide any sign of weakness, ensure that yours is the shoulder to cry on (not the tears to actually put on said shoulder), or ensure that our testosterone levels remain high and strong. That's not to say that we don't cry. I'm sure every male, at one point or another, lets a piece of his heart out and actually pulls a few tears out. In the last 10 years of my life, I can really only remember 3 times that I cried, and I will admit that all three of them were when I was alone. I don't tend to be a public crier. Something always holds me back.
The first time I remember crying in the last decade or so...well, that story will undoubtedly be told when I get back to writing the prologue to Sam's story. Let's just say that involved me, my deck, and one of the moments in my life that I truly felt the weakest. But telling that story now would do disservice to the actual context of it. Just...stay tuned. The second time I remember crying in the last decade was last summer, days after my sweet Grandmother had died. I didn't actually cry at her viewing, nor at her funeral (I got close, watching Lukas shed tears as they closed her casket), nor at her internment. Instead, I shed my tears in the quiet of my kitchen. Everyone had gone to sleep, and I had agreed to put together a slideshow of photos of my Grandma's life for the viewing to be held the next day. In that quiet...alone and staring at the many faces of my Grandma's life...that's when I cried. It was cathartic. It was meaningful. And then it was over.
So you must know how emotionally unprepared I had been when we got the news from the HHT Clinic that they believed the genesis of Sam's story was contained within my genetic code...my blood. Truth be told, they weren't 100% sure. They couldn't be. Only a genetic testing of my blood would really let them know if CM-AVM was the cause of all that had (and was to) happened. During that fateful meeting with Sam's Genetics doctors, they had assumed that CM-AVM was the cause because of the similarities of red birthmarks between father and son, and the fistula that had wrecked havoc on a young little infant. And due to their assumptions, a couple things needed to happen in short order. First was preventative. If they were right, I needed a MRI. We needed to rule out the possibility that I had a similar AVM/AVF, and recent statistics involved with this genetic disorder indicated that 30% of all cases included a spinal or brain AVM/AVF. But what they really wanted was my blood - they wanted to do a multitude of genetics tests to try to find the specific marker for this disorder. They would be looking at the RAS-1 gene, hopeful that they would find what they were looking for. That test, however, took 3-4 weeks to get results. Hence the MRI. Hence the quick schedule.
So the plan was simple. I was to return to the HHT Clinic the following Monday, this time as a patient. I'd get a full examination (more than just the "take your shirt off" quickie I'd encountered during Sam's appointment), get my blood drawn, and then would head into my first ever MRI. I should note that my personal medical history has been quite boring. Besides getting stitches in my pinky , and a tooth and thumb thing while I was an infant, the most exciting thing I had experienced was dropping all of my body weight onto my thumb just months ago while holding Sam. So going from nothing to MRI was slight exponential growth on the medical scale. On that Monday, Elisa said she would meet me for the festivities, but we did end up driving separate. And it was here (I was about 10 minutes early) that I cried for the third time in the last decade or so. Again, I picked my timing carefully. Alone in a hospital parking garage, with few around me. I didn't sob, nor was I sure why I was crying. But the guilt of Sam, the fear of something in my own brain, and the weight that this story - one that I had decided to chronicle in words - crushed down on me for a few moments. I collected myself, adjusted my mascara (okay, maybe not), and got out of the car to see what my own story would be.
Elisa was running late, so I headed in myself. I walked to the desk to check-in and was promptly told that I didn't have an appointment. Suddenly, I wondered if I'd made the whole thing up. Maybe I would wake up from the dream and be back at home, blissfully ignorant to a cause of Sam's fistula beyond that "one in a billion". I was then told that she just didn't have access to the right schedule, and to sit and wait. By the time they called me in, Elisa still wasn't at the hospital, so I texted her to just wait until I was done, and then we could head for the MRI. I was greeted by Jamie MacDonald again, and after a few requisite questions, my examination with Dr. Stevenson began. Apparently, my heart and lungs were great. My blood pressure was quite low. And sure enough, as he had with Sam, he found multiple red birth marks on my body. I was quite impressed that I was already aware of them, but it was strange to have him identify them as a physical manifestation of a genetic condition, as opposed to just a "birth mark". After he was satisfied that he had recorded every single mark on my body, he left and the poor nurse brigade came into draw my blood.
And oh, they tried. Numerous times, I was told that getting blood from someone my age shouldn't be this hard. Ummm...I'm sorry? One nurse failed, and sent another one in. I was just getting ready to meet my third nurse when Jamie MacDonald returned, saying that I was going to be late for my MRI. Apparently (it would have been nice to know this a bit earlier), my MRI was actually all the way across campus and was scheduled to begin in 13 minutes. Oops. So the blood draw was off, and I needed to get going. Unfortunately, in the day and age of smart phones, I made the mistake of asking for directions. I lost 5 of my 13 minutes watching them fumble on Google Maps for proper directions. I lost another 3 when they tried to print. I guess it is true that everyone has a specialty...and work outside of that specialty leaves a lot to be desired. Don't ask medical professionals to navigate Google and printers. Scary. Almost as bad as trying to draw my blood. Oh wait...
So I left the HHT Clinic in a mad rush, met up with Elisa, and we both headed across campus to get to the MRI. Don't worry - I didn't have time to shed any tears. I was trying to remember how to get around campus. You know, I went to the University of Utah for 4 years to get my Bachelor's and 2 more years for my Masters, and I still screwed up my path. Somehow, I thought that the road to the Union building had an exit. It didn't. So I got to take the scenic tour, openly wondering where the golf course had gone, and arrived quite a bit after Elisa. I was 10 minutes late. I wondered if they would punish me with bad music during the actual MRI. We headed in to find out if I had something festering up there in my brain. I checked in at the desk (it appeared that no punishment would be coming for me), and then we waited. I filled out paperwork that found 1,232 new ways to ask a basic question: do you have any metal in your body? I honestly started wondering how many people checked yes to half of these questions. If so, they need to step away from metal of any kind. They are gluttons for punishment.
A few minutes later, they called my name and I headed into the "preparation" area. For those of you who don't know how this works, let me enlighten you. First, they are nice enough to remind you that this will be the last time you can use the restroom for quite awhile. They strongly encourage you to try. Yes, honestly. So after that necessary step was taken care of, you then turn your attention to the lockers and changing stalls. The instructions are clear. Put on a gown. Put on the pants. Put on a coat. Yet, when you get in there, it's not quite as intuitive. Why? Well, the gown opens at the back, the pants have a draw string, and the coat is pretty large. I have no problem admitting that it took a couple times to realize that the combination was meant for ultimate protection...as you go back out into the open waiting room. Nothing awkward like wonder if your money maker is hanging out in between your too large pants, open gown, and awkward coat. All I needed was a pipe and I could have probably been the next Hugh Hefner.
Which brings me to the best part of this entire experience. I wonder what someone does when they come in alone. Why, you might ask? It has to do with the locker. The key to the locker is quite large, and is attached to a large metal ring. So after you dispose of all of your clothes and put on the three piece outfit, you walk back out and stare at a door that plainly states that no metal can accompany you. I was lucky. I passed the "one ring to rule them all" over to Elisa. But I can only imagine the conflict in a MRI patient that doesn't have a friend to come along. You have to have the key...because otherwise other patrons could get into your stuff. But you can't take the key. Maybe it was a puzzle that you had to solve...and if you couldn't, they punished you with bad music in the MRI machine. I started expounding on this conundrum to Elisa, who just stared at me like I had better things to be worried about. To my credit, I'd gone from private tears to openly wondering about metal keys and their difficulties to a MRI patient in the span of an hour.
Soon enough, the metal key and the ring of death stayed with Elisa and I was called back for the MRI. The tech was nice enough...he asked me what kind of music I liked and promised to pump a Pandora station into my headphones. He then told me that I'd be getting an IV, as they had to inject dye into my veins so they could take pictures. Lovely. That wasn't really expected and I started to wonder if I'd be like Sam was, smelling like bad Chinese food for the next couple of days. While the nurses at the HHT clinic hadn't been able to draw some simple blood, this tech had no problem establishing an IV. He asked me if I was claustrophobic, to which I said "I doubt it", and then I laid down. I wasn't prepared for the metal head trap of doom to come over me. And as I was wheeling back into the tube, the tech gave me the brilliant advice of "just listen to the music...don't count the booms". Don't count? Is he even slightly aware that counting booms plays right into my slight OCD? Hey then added "some people come out and have heard over 1,000." Ummm...now, I almost HAVE to count don't I?
I spent the first 30 minutes trying to focus on the music (I chose Dave Matthews Band). Ants Marching....34, 35, 36, 37....Don't Drink the Water....112, 113, 114...What Would You Say?...232, 232, 235....and then got distracted by an all bigger problem and annoyance. For the last week, I'd been getting over a cold and heading into the MRI, I was feeling pretty good. I'm not sure if it was the angle of my head in the metal ring of doom around it, but suddenly, I felt like I couldn't breathe properly out of my nose. I could only imagine what the tech was thinking as I started this strange swallow/sniff routine to try to save myself from passing out due to a lack of oxygen. Let's just say by this point, I wasn't counting booms anymore. I was trying to breathe. And no, it wasn't claustrophobia. I doubt if it was, I would have noticed how many little dots of some black stuff were right above my head (13), nor that there was a big scratch the kind of looked like a moon from a Van Gogh painting about 30 degrees to the right. Don't judge. OCD, I tell ya. But it was disconcerting to not be able to breathe because of my outgoing cold. It was more depressing when he came in and said I needed an extra 10 minutes because the pictures were fuzzy. Hey tech...you try to get perfect pictures when you have post nasal drip!
Before I knew it, though, the MRI was over, the IV was out, and I stood up. I gasped for air as if I had been deprived, and I could almost feel the post nasal drip subside. I stumbled out of the MRI room and retrieved the metal ring of Mordor so that I could remove my custom three piece suit and get dressed again. When I came out, I was informed that results would probably come from my doctor in 24-48 hours. We walked out together, said our goodbyes, and Elisa and I went our separate ways. As I drove back from the MRI to work, there were no more tears. Just a vision that I never expected. Sam and I, each on a gurney, each getting an embolization that neither of knew we needed and neither of us truly wanted. In truth, I wasn't sure if I had an AVM - I had been the picture of health for 35 years, so I was quite confident that I didn't have anything up there. But the thought that I could was daunting. And for that one moment, I stopped being Sam's dad, helping him in his journey. I was Sam. I realized the fear and worry that Sam never would...but that he should. A threat to something you never really worry about unless you have to - damage to your brain. And as I drove back to work, I didn't feel scared. Or sad. I felt paralyzed.
I'll spare you waiting for the next blog post to find out the results. The next day, I called Jamie MacDonald (of course I had to call...they couldn't do me the honors) and asked about my results. She looked them up while I sat on the phone in my office and stared out the window. She stated that the results were only preliminary, and she would absolutely call when they were official (she never did), but my MRI results were completely normal. No AVM. Just red birth marks, and the wonder if this was actually CM-AVM at all (I still hadn't gotten my blood drawn). I called Elisa first and told her the news. I wasn't sure what reaction I expected, but I was pleasantly surprised when her only reaction was that she was now left without a medical reason that explained me being clearly abnormal. I had to laugh. Count on Elisa to find the silver lining in a bad situation.
As for me, when I got home knowing that I didn't have an AVM, I immediately went over to Sam and picked him up. I held him close and whispered the only words that came to mind. The only words that seemed to matter in that moment. The words that continued to paralyze me, long after I realized that my brain was pretty damn normal. I whispered "I'm sorry". For he was carrying the burden that my blood potentially had caused...and that I had avoided.
And quite clearly, the world didn't seem like a fair place at all.
A few minutes later, they called my name and I headed into the "preparation" area. For those of you who don't know how this works, let me enlighten you. First, they are nice enough to remind you that this will be the last time you can use the restroom for quite awhile. They strongly encourage you to try. Yes, honestly. So after that necessary step was taken care of, you then turn your attention to the lockers and changing stalls. The instructions are clear. Put on a gown. Put on the pants. Put on a coat. Yet, when you get in there, it's not quite as intuitive. Why? Well, the gown opens at the back, the pants have a draw string, and the coat is pretty large. I have no problem admitting that it took a couple times to realize that the combination was meant for ultimate protection...as you go back out into the open waiting room. Nothing awkward like wonder if your money maker is hanging out in between your too large pants, open gown, and awkward coat. All I needed was a pipe and I could have probably been the next Hugh Hefner.
Which brings me to the best part of this entire experience. I wonder what someone does when they come in alone. Why, you might ask? It has to do with the locker. The key to the locker is quite large, and is attached to a large metal ring. So after you dispose of all of your clothes and put on the three piece outfit, you walk back out and stare at a door that plainly states that no metal can accompany you. I was lucky. I passed the "one ring to rule them all" over to Elisa. But I can only imagine the conflict in a MRI patient that doesn't have a friend to come along. You have to have the key...because otherwise other patrons could get into your stuff. But you can't take the key. Maybe it was a puzzle that you had to solve...and if you couldn't, they punished you with bad music in the MRI machine. I started expounding on this conundrum to Elisa, who just stared at me like I had better things to be worried about. To my credit, I'd gone from private tears to openly wondering about metal keys and their difficulties to a MRI patient in the span of an hour.
Soon enough, the metal key and the ring of death stayed with Elisa and I was called back for the MRI. The tech was nice enough...he asked me what kind of music I liked and promised to pump a Pandora station into my headphones. He then told me that I'd be getting an IV, as they had to inject dye into my veins so they could take pictures. Lovely. That wasn't really expected and I started to wonder if I'd be like Sam was, smelling like bad Chinese food for the next couple of days. While the nurses at the HHT clinic hadn't been able to draw some simple blood, this tech had no problem establishing an IV. He asked me if I was claustrophobic, to which I said "I doubt it", and then I laid down. I wasn't prepared for the metal head trap of doom to come over me. And as I was wheeling back into the tube, the tech gave me the brilliant advice of "just listen to the music...don't count the booms". Don't count? Is he even slightly aware that counting booms plays right into my slight OCD? Hey then added "some people come out and have heard over 1,000." Ummm...now, I almost HAVE to count don't I?
I spent the first 30 minutes trying to focus on the music (I chose Dave Matthews Band). Ants Marching....34, 35, 36, 37....Don't Drink the Water....112, 113, 114...What Would You Say?...232, 232, 235....and then got distracted by an all bigger problem and annoyance. For the last week, I'd been getting over a cold and heading into the MRI, I was feeling pretty good. I'm not sure if it was the angle of my head in the metal ring of doom around it, but suddenly, I felt like I couldn't breathe properly out of my nose. I could only imagine what the tech was thinking as I started this strange swallow/sniff routine to try to save myself from passing out due to a lack of oxygen. Let's just say by this point, I wasn't counting booms anymore. I was trying to breathe. And no, it wasn't claustrophobia. I doubt if it was, I would have noticed how many little dots of some black stuff were right above my head (13), nor that there was a big scratch the kind of looked like a moon from a Van Gogh painting about 30 degrees to the right. Don't judge. OCD, I tell ya. But it was disconcerting to not be able to breathe because of my outgoing cold. It was more depressing when he came in and said I needed an extra 10 minutes because the pictures were fuzzy. Hey tech...you try to get perfect pictures when you have post nasal drip!
Before I knew it, though, the MRI was over, the IV was out, and I stood up. I gasped for air as if I had been deprived, and I could almost feel the post nasal drip subside. I stumbled out of the MRI room and retrieved the metal ring of Mordor so that I could remove my custom three piece suit and get dressed again. When I came out, I was informed that results would probably come from my doctor in 24-48 hours. We walked out together, said our goodbyes, and Elisa and I went our separate ways. As I drove back from the MRI to work, there were no more tears. Just a vision that I never expected. Sam and I, each on a gurney, each getting an embolization that neither of knew we needed and neither of us truly wanted. In truth, I wasn't sure if I had an AVM - I had been the picture of health for 35 years, so I was quite confident that I didn't have anything up there. But the thought that I could was daunting. And for that one moment, I stopped being Sam's dad, helping him in his journey. I was Sam. I realized the fear and worry that Sam never would...but that he should. A threat to something you never really worry about unless you have to - damage to your brain. And as I drove back to work, I didn't feel scared. Or sad. I felt paralyzed.
I'll spare you waiting for the next blog post to find out the results. The next day, I called Jamie MacDonald (of course I had to call...they couldn't do me the honors) and asked about my results. She looked them up while I sat on the phone in my office and stared out the window. She stated that the results were only preliminary, and she would absolutely call when they were official (she never did), but my MRI results were completely normal. No AVM. Just red birth marks, and the wonder if this was actually CM-AVM at all (I still hadn't gotten my blood drawn). I called Elisa first and told her the news. I wasn't sure what reaction I expected, but I was pleasantly surprised when her only reaction was that she was now left without a medical reason that explained me being clearly abnormal. I had to laugh. Count on Elisa to find the silver lining in a bad situation.
As for me, when I got home knowing that I didn't have an AVM, I immediately went over to Sam and picked him up. I held him close and whispered the only words that came to mind. The only words that seemed to matter in that moment. The words that continued to paralyze me, long after I realized that my brain was pretty damn normal. I whispered "I'm sorry". For he was carrying the burden that my blood potentially had caused...and that I had avoided.
And quite clearly, the world didn't seem like a fair place at all.
Saturday, March 29, 2014
Saving Sam (Chapter 5.03): Uhhh...how did I end up with my shirt off?
I must admit, that while I was pretty comprehensive in my wrap up of our last time with Dr. Day, I wasn't entirely forthcoming. I could rationalize that I was just overwhelmed with the wonderful news that Sam could come off oxygen for the day. I'd be more accurate in admitting that the other piece of the conversation with Dr. Day was met with a healthy dose of skepticism. After all, I had conditioned myself to believe and expect one immutable truth - Sam's condition would be fixed, but in doing so, we would never really know why the journey had to happen in the first place. From the beginning, we were told that Sam was special - one of the doctors even said "one in a billion". Fistulas like this happened as a fluke, and Sam had simply drawn the wrong numbers in life's lottery. I had accepted that. Early on, it drove me crazy. As time passed, I found a certain comfort about it. After all, if there was another cause, I was sure that there would be other problems...health concerns that we hadn't even considered. No, I was fine thinking that Sam was just that fluke. It made it easy to see how special he was. It made it easier to wonder why we were the ones having to go through it. But more than anything else, it made it infinity easiest to know that once the fistula was fixed, we would hopefully be in the clear.
Hence the skepticism, as Dr. Day started fishing. I must admit, the guy has impeccable timing. Only Dr. Doom could find a way, at the end of a fantastic visit, to throw a cold glass of ice water on the festivities. As we were wrapping up with our visit, and Dr. Day was doing one last cursory examination of Sam, his eyes stopped on Sam's knee. There, in plain sight, was a red birthmark. I watched as his eyes considered it. I heard as he asked if that had been there the whole time. I doubted when he started to unveil his next theory. But I also listened, as Dr. Day had been remarkable in his theories and ideas. Where would we be if he hadn't put a stethescope on Sam's head? As we stood, getting Sam ready to go home (and to start weaning him off of oxygen), Dr. Day mentioned that it might be a good idea to get the birthmark checked out. A few seconds later, he had scoured Sam's legs and found a couple more birthmarks. He wondered, out loud, if Sam might have something called HHT (Hereditary Hemorrhagic Telangiectasia). I had heard about this genetic disorder when we were living through our first Primary Children's visit. Do you remember me blogging about the Genetic Army coming through, and being thoroughly put out when our family history didn't match up with their preconceptions? So when Dr. Day mentioned it, I simply remembered the dejected looking counselors walking out of our room when they didn't find a bunch of people that happened to have bloody noses in their family history. He asked if we would mind him making a connection with the University Hospital HHT clinic, and at this point, I felt the most respectful thing would be to let him get on with his theory. The worst that could happen was to come back and tell him he was wrong, and to try again.
So we left and went on with our lives. After all, Sam's oxygen was dominating many of our thoughts for the next couple weeks. I vaguely remember Elisa telling me she had scheduled an appointment at the end of January at the HHT Clinic (they called us, after talking to Dr. Day). I was still surprised when we got our reminder in the mail. I wasn't the only skeptical one, either. Elisa and I had a drawn out conversation in our kitchen when the reminder came, questioning whether we needed to go at all. Why waste time off work to go up, explain our family history, and observe the dejection as it came into focus on their faces? But we agreed that, at the very least, we could just cross another thing off the list (a little more officially) as to why Sam had a fistula at all. In the end, we headed up to University Hospital and into the HHT Clinic.
It was weird to be back at University Hospital, since the last time I was there (except for the little trips to the cafeteria or Starbucks) was for Sam's first embolization. Going now to see specialists that would poke and prod at the little man to find a root cause gave me no further comfort or satisfaction. I know what you're thinking - wouldn't you want to know the cause? There's something scary about finding out more. When you have a sick child, you sit in hospital rooms or doctor's offices, hoping for good news but dreading the worst. In fact, it's the fear of what they'll find that dominates you, not the hope of what they won't. You're in a hospital, after all...there's usually a reason beyond treating the place like an Extended Stay hotel. So here we were, facing an office that exists for the sole reason of digging through your DNA to find out why things happen. I didn't get the warm fuzzies that we were here.
We started our consultation with Jamie MacDonald, a geneticist and the assistant to our eventual Dr. (Stevenson). I thought, hopefully, that the geneticists from Primary's would have talked to these guys, and we could avoid the whole family history diatribe. I was wrong - so we painstakingly walked through our family histories, as Jamie was looking for some very specific commonalities. HHT is known for capillary malformations that can range from red spots within the oral cavity, to recurrent nosebleeds, to...you guessed it...AVMs and AVFs. As we went through our histories, though, I was the only one that had even a small amount of nosebleeds, and the couldn't really be categorized as recurrent. Jamie's ears did perk up, however, when I mentioned that Sam's birthmarks weren't out of the ordinary. After all, I've had some of those very same birthmarks my entire life. No biggie, right? She wrote down a lot of notes as we talked, and openly said that Dr. Day seemed to be off on his initial thoughts of HHT. As I was physically exhaling from that bit of news, she added "but based on what we had heard, we weren't of the opinion that it was HHT anyway. We think it's most likely something else". Another theory. Another hypothesis. Another genetic problem that could be linked to little Sam.
We were then joined by Dr. Stevenson, who was a very nice man...and clearly knows his stuff. Jamie was a bit...rough around the edges. You could tell that Sam was almost a laboratory experiment that happened to show up for examination. I half expected her to pull out a banana and ask him to do a trick. Dr. Stevenson was much softer. He reviewed the family history and then began his examination of Sam. It was clear that he was focused on finding only one thing...red birthmarks. I knew Sam had a few, but I was kind of taken aback when they hadn't even left his legs and we were up to 6 already. Sure enough, Sam had some on his head, his arms, and his trunk (in addition to the legs). No, he's not a patchwork quilt. They aren't large and they're hardly noticeable, but by the time they were done, they had seen enough...and it seemed to be confirming their suspicions of whatever was rolling around in their heads. And then this exchange occurred.
You know, before I share, I must admit that this is one of those moments that I'll add to that blog I wrote some time back. Sam's birth. The September 30th Dr. Doom incident. December 10th embolization. I added January 28th to the pile. The date of the exchange. The day that Sam's journey took on a very different...and very personal new path.
Dr Stevenson: "So you said in the family history that you have red birthmarks on your body?"
Brad: "Yeah, I've always had them. I have a couple on my arms. A couple on my chest. So I wasn't surprised when Sam had them."
Dr. Stevenson: "So we don't believe that Sam has HHT. The distribution of the red marks isn't consistent, but we do think there is a high probability that he does have a genetic condition called Capillary Malformation - AVM, or CM-AVM. This is a condition that most commonly is inherited."
Brad: "..."
Dr. Stevenson: "Would you mind if you took your shirt off, so we can look at your birthmarks?"
Two realities were crashing upon me as I slowly unbuttoned my shirt. First, there was the very real possibility that Sam's fistula had a source...a reason beyond being a fluke or one in a billion. The second, more troubling, was that the reason could be me.
I've lived my entire life with a few random red birthmarks. There is one on my right arm, where my elbow bends in, that I remember for as long as I have memories. But it was harmless, worthless. Nothing more than an interesting dent in a car that had to have an interesting backstory. To know that something like that was going to be the eventual cause of Sam's struggles in life felt decidedly overwhelming. Like an out of body experience, I watched as I was examined, and Dr. Stevenson found multiple red birthmarks...now being referred to as capillary malformations...on me. I was in my own head, thinking of how to handle the impending guilt that was crashing upon me. I looked at Elisa, who almost had a sense of relief. I could tell that a different emotion was washing over her...realization that we did have an answer and a cause of Sam's story. It was strange to have heard the same news and yet react in such different ways.
I didn't blame Elisa. I could see the relief in her mind...sure, we weren't really positive about what CM-AVM might entail, but from the initial sounds of it, it was the genetic disorder you wanted to have if you had to choose! It appeared that the primary symptoms were red birthmarks, or areas of the skin where the capillaries are malformed (causing the red appearance). In only 30% of those with CM-AVM did an actual AVM or AVF appear. Later that night, I'd do my own internet research, and find myself quite shocked that this disorder read word for word like Sam's initial 5 months (when a fistula was large enough to cause problems). Even as the doctors talked about the disorder, it felt like the worst part was Sam's current experience. It gave rise to hope that perhaps if the fistula could be completely eradicated, Sam might be okay.
But that's not where I was at the moment. I was standing in a room with my shirt off, getting examined when I didn't expect to be. I was exposed, though not for the physical reasons you're thinking. It was just that the attention had turned to me. Sam was probably enjoying himself...he wasn't the center of attention for once. I was, and I didn't care for it. And as I was dealing with what I can only call a building sense of guilt that my blood...my genes...might be the culprit behind all of it, I hadn't made the mental leap that Dr. Stevenson was going to take for me. MRI. No, not Sam's. They already knew what they were dealing with in Sam. No, a MRI for me. Not only were they confident that Sam and I shared a genetic disorder called CM-AVM...now they were worried (and had to rule out) about me having an undiagnosed AVM or AVF. Sure, it wasn't likely to be as large as Sam's, or I would have encountered something much earlier in life. But the risk was there and had to be addressed. As Elisa took care of Sam and got him ready to go home, I walked through bare halls of the hospital, in the wake of Jamie MacDonald, as we tried to find someone to schedule the MRI with.
Before I knew it, I had a MRI scheduled for the following Monday. That would be preceded by my own official appointment at the HHT clinic, along with some really fun conversations that I got to have with my parents about the potential existence of red birthmarks on them. And then, I had to go home, strip my two older boys down, and desperately look for a lack of red birthmarks on them. And that's what I did. I stumbled home, nearly crying 2-3 times through my guilt, and now personal worry for what might be rattling around in my own brain. Once home, we ate dinner and then it was time to get the boys ready for a bath. In succession, each one stared at me while I looked over their arms, trunks, and legs...searching for the existence of little red birthmarks. Something so generic and seemingly unimportant that I had convinced myself for 35 years that they were nothing...just part of my genetics.
Well, I guess I was right about that one. Just wrong about it being 'normal'. Suddenly, Saving Sam was taking a whole new perspective in my head. If we had spent the last 5 months trying to save Sam, was it even remotely possible that the roles were reversing? Was Sam's condition and a chance trip to a genetics clinic going to be in the position to save me? And why did I even need saving in the first place?
Until next time.
Hence the skepticism, as Dr. Day started fishing. I must admit, the guy has impeccable timing. Only Dr. Doom could find a way, at the end of a fantastic visit, to throw a cold glass of ice water on the festivities. As we were wrapping up with our visit, and Dr. Day was doing one last cursory examination of Sam, his eyes stopped on Sam's knee. There, in plain sight, was a red birthmark. I watched as his eyes considered it. I heard as he asked if that had been there the whole time. I doubted when he started to unveil his next theory. But I also listened, as Dr. Day had been remarkable in his theories and ideas. Where would we be if he hadn't put a stethescope on Sam's head? As we stood, getting Sam ready to go home (and to start weaning him off of oxygen), Dr. Day mentioned that it might be a good idea to get the birthmark checked out. A few seconds later, he had scoured Sam's legs and found a couple more birthmarks. He wondered, out loud, if Sam might have something called HHT (Hereditary Hemorrhagic Telangiectasia). I had heard about this genetic disorder when we were living through our first Primary Children's visit. Do you remember me blogging about the Genetic Army coming through, and being thoroughly put out when our family history didn't match up with their preconceptions? So when Dr. Day mentioned it, I simply remembered the dejected looking counselors walking out of our room when they didn't find a bunch of people that happened to have bloody noses in their family history. He asked if we would mind him making a connection with the University Hospital HHT clinic, and at this point, I felt the most respectful thing would be to let him get on with his theory. The worst that could happen was to come back and tell him he was wrong, and to try again.
So we left and went on with our lives. After all, Sam's oxygen was dominating many of our thoughts for the next couple weeks. I vaguely remember Elisa telling me she had scheduled an appointment at the end of January at the HHT Clinic (they called us, after talking to Dr. Day). I was still surprised when we got our reminder in the mail. I wasn't the only skeptical one, either. Elisa and I had a drawn out conversation in our kitchen when the reminder came, questioning whether we needed to go at all. Why waste time off work to go up, explain our family history, and observe the dejection as it came into focus on their faces? But we agreed that, at the very least, we could just cross another thing off the list (a little more officially) as to why Sam had a fistula at all. In the end, we headed up to University Hospital and into the HHT Clinic.
It was weird to be back at University Hospital, since the last time I was there (except for the little trips to the cafeteria or Starbucks) was for Sam's first embolization. Going now to see specialists that would poke and prod at the little man to find a root cause gave me no further comfort or satisfaction. I know what you're thinking - wouldn't you want to know the cause? There's something scary about finding out more. When you have a sick child, you sit in hospital rooms or doctor's offices, hoping for good news but dreading the worst. In fact, it's the fear of what they'll find that dominates you, not the hope of what they won't. You're in a hospital, after all...there's usually a reason beyond treating the place like an Extended Stay hotel. So here we were, facing an office that exists for the sole reason of digging through your DNA to find out why things happen. I didn't get the warm fuzzies that we were here.
We started our consultation with Jamie MacDonald, a geneticist and the assistant to our eventual Dr. (Stevenson). I thought, hopefully, that the geneticists from Primary's would have talked to these guys, and we could avoid the whole family history diatribe. I was wrong - so we painstakingly walked through our family histories, as Jamie was looking for some very specific commonalities. HHT is known for capillary malformations that can range from red spots within the oral cavity, to recurrent nosebleeds, to...you guessed it...AVMs and AVFs. As we went through our histories, though, I was the only one that had even a small amount of nosebleeds, and the couldn't really be categorized as recurrent. Jamie's ears did perk up, however, when I mentioned that Sam's birthmarks weren't out of the ordinary. After all, I've had some of those very same birthmarks my entire life. No biggie, right? She wrote down a lot of notes as we talked, and openly said that Dr. Day seemed to be off on his initial thoughts of HHT. As I was physically exhaling from that bit of news, she added "but based on what we had heard, we weren't of the opinion that it was HHT anyway. We think it's most likely something else". Another theory. Another hypothesis. Another genetic problem that could be linked to little Sam.
We were then joined by Dr. Stevenson, who was a very nice man...and clearly knows his stuff. Jamie was a bit...rough around the edges. You could tell that Sam was almost a laboratory experiment that happened to show up for examination. I half expected her to pull out a banana and ask him to do a trick. Dr. Stevenson was much softer. He reviewed the family history and then began his examination of Sam. It was clear that he was focused on finding only one thing...red birthmarks. I knew Sam had a few, but I was kind of taken aback when they hadn't even left his legs and we were up to 6 already. Sure enough, Sam had some on his head, his arms, and his trunk (in addition to the legs). No, he's not a patchwork quilt. They aren't large and they're hardly noticeable, but by the time they were done, they had seen enough...and it seemed to be confirming their suspicions of whatever was rolling around in their heads. And then this exchange occurred.
You know, before I share, I must admit that this is one of those moments that I'll add to that blog I wrote some time back. Sam's birth. The September 30th Dr. Doom incident. December 10th embolization. I added January 28th to the pile. The date of the exchange. The day that Sam's journey took on a very different...and very personal new path.
Dr Stevenson: "So you said in the family history that you have red birthmarks on your body?"
Brad: "Yeah, I've always had them. I have a couple on my arms. A couple on my chest. So I wasn't surprised when Sam had them."
Dr. Stevenson: "So we don't believe that Sam has HHT. The distribution of the red marks isn't consistent, but we do think there is a high probability that he does have a genetic condition called Capillary Malformation - AVM, or CM-AVM. This is a condition that most commonly is inherited."
Brad: "..."
Dr. Stevenson: "Would you mind if you took your shirt off, so we can look at your birthmarks?"
Two realities were crashing upon me as I slowly unbuttoned my shirt. First, there was the very real possibility that Sam's fistula had a source...a reason beyond being a fluke or one in a billion. The second, more troubling, was that the reason could be me.
I've lived my entire life with a few random red birthmarks. There is one on my right arm, where my elbow bends in, that I remember for as long as I have memories. But it was harmless, worthless. Nothing more than an interesting dent in a car that had to have an interesting backstory. To know that something like that was going to be the eventual cause of Sam's struggles in life felt decidedly overwhelming. Like an out of body experience, I watched as I was examined, and Dr. Stevenson found multiple red birthmarks...now being referred to as capillary malformations...on me. I was in my own head, thinking of how to handle the impending guilt that was crashing upon me. I looked at Elisa, who almost had a sense of relief. I could tell that a different emotion was washing over her...realization that we did have an answer and a cause of Sam's story. It was strange to have heard the same news and yet react in such different ways.
I didn't blame Elisa. I could see the relief in her mind...sure, we weren't really positive about what CM-AVM might entail, but from the initial sounds of it, it was the genetic disorder you wanted to have if you had to choose! It appeared that the primary symptoms were red birthmarks, or areas of the skin where the capillaries are malformed (causing the red appearance). In only 30% of those with CM-AVM did an actual AVM or AVF appear. Later that night, I'd do my own internet research, and find myself quite shocked that this disorder read word for word like Sam's initial 5 months (when a fistula was large enough to cause problems). Even as the doctors talked about the disorder, it felt like the worst part was Sam's current experience. It gave rise to hope that perhaps if the fistula could be completely eradicated, Sam might be okay.
But that's not where I was at the moment. I was standing in a room with my shirt off, getting examined when I didn't expect to be. I was exposed, though not for the physical reasons you're thinking. It was just that the attention had turned to me. Sam was probably enjoying himself...he wasn't the center of attention for once. I was, and I didn't care for it. And as I was dealing with what I can only call a building sense of guilt that my blood...my genes...might be the culprit behind all of it, I hadn't made the mental leap that Dr. Stevenson was going to take for me. MRI. No, not Sam's. They already knew what they were dealing with in Sam. No, a MRI for me. Not only were they confident that Sam and I shared a genetic disorder called CM-AVM...now they were worried (and had to rule out) about me having an undiagnosed AVM or AVF. Sure, it wasn't likely to be as large as Sam's, or I would have encountered something much earlier in life. But the risk was there and had to be addressed. As Elisa took care of Sam and got him ready to go home, I walked through bare halls of the hospital, in the wake of Jamie MacDonald, as we tried to find someone to schedule the MRI with.
Before I knew it, I had a MRI scheduled for the following Monday. That would be preceded by my own official appointment at the HHT clinic, along with some really fun conversations that I got to have with my parents about the potential existence of red birthmarks on them. And then, I had to go home, strip my two older boys down, and desperately look for a lack of red birthmarks on them. And that's what I did. I stumbled home, nearly crying 2-3 times through my guilt, and now personal worry for what might be rattling around in my own brain. Once home, we ate dinner and then it was time to get the boys ready for a bath. In succession, each one stared at me while I looked over their arms, trunks, and legs...searching for the existence of little red birthmarks. Something so generic and seemingly unimportant that I had convinced myself for 35 years that they were nothing...just part of my genetics.
Well, I guess I was right about that one. Just wrong about it being 'normal'. Suddenly, Saving Sam was taking a whole new perspective in my head. If we had spent the last 5 months trying to save Sam, was it even remotely possible that the roles were reversing? Was Sam's condition and a chance trip to a genetics clinic going to be in the position to save me? And why did I even need saving in the first place?
Until next time.
Wednesday, March 26, 2014
Saving Sam (Chapter 5.02): A long, deep breath
Elisa has been giving me grief for falling off of the blogging wagon for weeks, if not months. She told me multiple times that people were asking where the blog posts had gone - they wanted updates on Sam, and since I spread the news that Dr. Doom was not as dreary as previous, and Sam could come off of oxygen during the day. That was over 2 months ago. No blog posts. No extended Facebook posts. Nada. For a few weeks, I've wondered where the blog bug had gone. Why wasn't I writing? Why didn't I pull out my computer every night, as I had since September? Well, here I am, writing again, both because I actually saw someone (on Facebook) as Elisa where the blog had gone, and I think I also figured out why the writing stopped.
You can all thank Amie Corey, one of Elisa's friends, for the return of the blog. She was the one that publicly asked, and her post was the one that pushed me to start writing out an outline of a 6-blog series to catch everyone up on little Sam. Yet, it was the hours leading up to the writing that finally opened my eyes to why I had stopped. For awhile, I had convinced myself that happy thoughts weren't as easy to write about (in a strange, twisted way). I also wondered if one of my chief reasons for the blog (public therapy) had faded, as Sam was no longer under a danger watch, and I could probably manage my personal feelings without long winded blog posts. It turns out, both were wrong. The writing stopped because I had hit an emotionally exhausted wall. For nearly 4 months, Elisa and I lived at the edge of sanity. Every day, we would wonder what could happen...heart failure, neurological problems, or worse (thanks, Dr. Doom). I'd thank the universe before I went to bed that we (and Sam) had survived through another day. I'd wake up every morning, worried at what the next 16 hours would hold. Dr. visits were worse, as some of the most "benign" trips would turn into horrific nightmares. So when we left Dr. Day's office in early January with a diagnosis of improvement, as well as a reduction in Sam's intervention, my mind decided it needed a break.
Blogging is, for the reader, a (hopefully) interesting story that they've never heard before. For me, it was reliving pain, agony, fear, happiness, hope, and the lack there of. As we drove home from Dr. Day's, there was silence...a type that hadn't existed before Sam was born. A few nights later, after I had blogged about our visit, I brought my computer to the bedroom, intent on writing more. I stared at the screen for 30 minutes. No words came...and that's saying something from me. It was as if I was tapped out. I needed to not write. I needed to revel in the fact that things weren't as dire as they had been. I needed to embrace the silent comfort of hope.
Over two months later, however, it's time to go back. And as I look all the way back, I'm surprised at how much has transpired. So while I thank you all for letting me have a blogging breather, it's time to catch you up. Let's get started.
When you last left us, Elisa had headed home with the go ahead to take Sam off of oxygen. It was more than we had hoped for. We were crossing our fingers for a reduction from 1/4 L to 1/8 L. Now, we were okay to take him off for 14 hours a day. We were thrilled. We were shocked. We were...scared. That night, we both sat and stared at the oxygen tank. Were we to start to tomorrow? How would he do? It was funny to me that for four months, all I hoped for was to be rid of the oxygen, and now, I was clinging to it as though it was the only think keeping Sam here. It turns out that, while annoying, the oxygen was more of a security blanket than an albatross. And being given license to remove the security blanket, we felt exposed and scared.
I wish I could say we were brave - that we pulled the oxygen off during the days and never looked back, but that's not how it went. No, we focused on small oxygen trials before bed. 20 minutes, 30 minutes, 40 minutes. And then the oxygen would return and we'd get through the day. We had a million reasons why the oxygen should stay - did he have a cold? Was he breathing harder? Was it a Wednesday? Every reason we could find was considered. No, we didn't just leave it on all the time. We'd have mini breaks from the oxygen. We got really brave one night and did it up to a nap. As it turns out, though, it wasn't us that finally pulled the plug. It was my Mom.
By this point, Elisa was back to work. So my Mom started coming back around to watch the kids. While her love for Sam was equal to ours, her dependance on the oxygen was not. So we would both leave to work, and my Mom would drop the oxygen. Sure, we'd come home worried that he was breathing harder, but he'd survived a day and we started wondering if he was doing a little better than we were letting ourselves believe. Logical me, when I stepped back, just saw oxygen levels (on the oximeter) of 90-93. It didn't seem high enough, even though he wasn't dropping into dangerous territory. But my Mom's actions gave us a little more confidence to see how Sam was going to do by himself. Before we knew it, Sam was off of oxygen during the days, save some time where his naps would worry us back to the cannula. But then, something amazing happened. Sam's oxygen readings started to change.
It was a Saturday after a long day without oxygen when I decided to plug Sam into the oximeter before turning on the switch at the tank. Usually, I'd get him set, turn on the o2, and then put him in his room. Tonight, I was curious as to how he held up during a very long day. The oximeter went on, the numbers popped up, and I was immediately sure that we were getting a bad reading. Sam was sitting at 97%...without oxygen. I was sure it was going to change. I was right, though not about the result. Suddenly, he was 98%...still awake, cooing at me from his crib. At 98% oxygen. I'm now convinced that Sam was ready from the moment Dr. Day said we could move forward. But this is a baby, and I sometimes forget that he is learning to do everything from scratch - including how to breathe. He needed to learn a bit - how to handle this thing on his own. I'm immensely grateful to my Mom for trusting Sam more than we were ready to trust him.
Like a light switch clicking on, though, Sam getting off of oxygen changed the world for the better. For four months, every day, were hooked to a tank at the top of our stairs. Sure, the cannula was on Sam, but it's cord extended around our own hands and feet. It grounded us in our house, and was a reminder of the struggles Sam had been through. You may be scoffing. I'm sure someone out there is thinking "I see people at the grocery store with a little oxygen tank all the time!" So do I. But switching to the small tank, always making sure Sam was hooked to a good flow, and the cord...the dratted cord...the number of times I tripped on that thing, I tell you.
But off oxygen, we truly did feel free. Elisa brought Sam to the boys swimming lessons one Saturday morning. I started a mini habit of bringing Sam to the grocery store every Sunday morning. We started going out to stores again. We started feeling normal. And while this was all wonderful (and it was), that wasn't the best part of the experience. No, that was when we finally let go of the cannula during the day. When I saw his face...his beautiful, cannula free face, I nearly lost it. He looked so different. Almost like someone who wears glasses all the time might look if they finally take them off. It's more subtle than you think, but you realize that your perception of them includes the glasses...or the cannula. It feels foreign...wonderful foreign...when it's gone.
As for the rest of Sam, I'll admit that the adjustment off of oxygen made us hesitant and worried elsewhere. We had tried to start him on rice cereal, but his stomach and intestines seemed to react - he seemed to have a constant belly ache and a bout of constipation. He was still on three doses of Lasiks, 3 doses of Sildenafil, and 2 doses of Zantac. And from a couple visits to Dr. Pete, we were well aware that Sam's heart failure episode in December had really slowed down his weight gain. The boy, while long, was not a chunky baby. While other kids were spending time morphing into Michelin Men (and women), baby Sam was using every ounce of his energy to pump an overwhelmed heart.
Yet, for all of the struggles, it did remain that it really felt like Sam was on the road to recovery. A long road, still with perilous and sharp turns, but a road worth taking. As for the oxygen, it took me about a week to get used to a cannula free Sam. And for now...for that moment, it also felt okay to put the oxygen back on at night. It felt like were keeping that security blanket just within reach, hopefully allowing us to try to get some sleep.
Sleep...now that was something Sam wasn't willing to give to us just yet. And there was still that pesky little issue of still not officially knowing what had caused Sam's fistula in the first place. In the back of my mind, I was always expecting to never find that out...to view Sam as a fluke, and one in a billion. How very wrong I'd be.
Until next time.
You can all thank Amie Corey, one of Elisa's friends, for the return of the blog. She was the one that publicly asked, and her post was the one that pushed me to start writing out an outline of a 6-blog series to catch everyone up on little Sam. Yet, it was the hours leading up to the writing that finally opened my eyes to why I had stopped. For awhile, I had convinced myself that happy thoughts weren't as easy to write about (in a strange, twisted way). I also wondered if one of my chief reasons for the blog (public therapy) had faded, as Sam was no longer under a danger watch, and I could probably manage my personal feelings without long winded blog posts. It turns out, both were wrong. The writing stopped because I had hit an emotionally exhausted wall. For nearly 4 months, Elisa and I lived at the edge of sanity. Every day, we would wonder what could happen...heart failure, neurological problems, or worse (thanks, Dr. Doom). I'd thank the universe before I went to bed that we (and Sam) had survived through another day. I'd wake up every morning, worried at what the next 16 hours would hold. Dr. visits were worse, as some of the most "benign" trips would turn into horrific nightmares. So when we left Dr. Day's office in early January with a diagnosis of improvement, as well as a reduction in Sam's intervention, my mind decided it needed a break.
Blogging is, for the reader, a (hopefully) interesting story that they've never heard before. For me, it was reliving pain, agony, fear, happiness, hope, and the lack there of. As we drove home from Dr. Day's, there was silence...a type that hadn't existed before Sam was born. A few nights later, after I had blogged about our visit, I brought my computer to the bedroom, intent on writing more. I stared at the screen for 30 minutes. No words came...and that's saying something from me. It was as if I was tapped out. I needed to not write. I needed to revel in the fact that things weren't as dire as they had been. I needed to embrace the silent comfort of hope.
Over two months later, however, it's time to go back. And as I look all the way back, I'm surprised at how much has transpired. So while I thank you all for letting me have a blogging breather, it's time to catch you up. Let's get started.
When you last left us, Elisa had headed home with the go ahead to take Sam off of oxygen. It was more than we had hoped for. We were crossing our fingers for a reduction from 1/4 L to 1/8 L. Now, we were okay to take him off for 14 hours a day. We were thrilled. We were shocked. We were...scared. That night, we both sat and stared at the oxygen tank. Were we to start to tomorrow? How would he do? It was funny to me that for four months, all I hoped for was to be rid of the oxygen, and now, I was clinging to it as though it was the only think keeping Sam here. It turns out that, while annoying, the oxygen was more of a security blanket than an albatross. And being given license to remove the security blanket, we felt exposed and scared.
I wish I could say we were brave - that we pulled the oxygen off during the days and never looked back, but that's not how it went. No, we focused on small oxygen trials before bed. 20 minutes, 30 minutes, 40 minutes. And then the oxygen would return and we'd get through the day. We had a million reasons why the oxygen should stay - did he have a cold? Was he breathing harder? Was it a Wednesday? Every reason we could find was considered. No, we didn't just leave it on all the time. We'd have mini breaks from the oxygen. We got really brave one night and did it up to a nap. As it turns out, though, it wasn't us that finally pulled the plug. It was my Mom.
By this point, Elisa was back to work. So my Mom started coming back around to watch the kids. While her love for Sam was equal to ours, her dependance on the oxygen was not. So we would both leave to work, and my Mom would drop the oxygen. Sure, we'd come home worried that he was breathing harder, but he'd survived a day and we started wondering if he was doing a little better than we were letting ourselves believe. Logical me, when I stepped back, just saw oxygen levels (on the oximeter) of 90-93. It didn't seem high enough, even though he wasn't dropping into dangerous territory. But my Mom's actions gave us a little more confidence to see how Sam was going to do by himself. Before we knew it, Sam was off of oxygen during the days, save some time where his naps would worry us back to the cannula. But then, something amazing happened. Sam's oxygen readings started to change.
It was a Saturday after a long day without oxygen when I decided to plug Sam into the oximeter before turning on the switch at the tank. Usually, I'd get him set, turn on the o2, and then put him in his room. Tonight, I was curious as to how he held up during a very long day. The oximeter went on, the numbers popped up, and I was immediately sure that we were getting a bad reading. Sam was sitting at 97%...without oxygen. I was sure it was going to change. I was right, though not about the result. Suddenly, he was 98%...still awake, cooing at me from his crib. At 98% oxygen. I'm now convinced that Sam was ready from the moment Dr. Day said we could move forward. But this is a baby, and I sometimes forget that he is learning to do everything from scratch - including how to breathe. He needed to learn a bit - how to handle this thing on his own. I'm immensely grateful to my Mom for trusting Sam more than we were ready to trust him.
Like a light switch clicking on, though, Sam getting off of oxygen changed the world for the better. For four months, every day, were hooked to a tank at the top of our stairs. Sure, the cannula was on Sam, but it's cord extended around our own hands and feet. It grounded us in our house, and was a reminder of the struggles Sam had been through. You may be scoffing. I'm sure someone out there is thinking "I see people at the grocery store with a little oxygen tank all the time!" So do I. But switching to the small tank, always making sure Sam was hooked to a good flow, and the cord...the dratted cord...the number of times I tripped on that thing, I tell you.
But off oxygen, we truly did feel free. Elisa brought Sam to the boys swimming lessons one Saturday morning. I started a mini habit of bringing Sam to the grocery store every Sunday morning. We started going out to stores again. We started feeling normal. And while this was all wonderful (and it was), that wasn't the best part of the experience. No, that was when we finally let go of the cannula during the day. When I saw his face...his beautiful, cannula free face, I nearly lost it. He looked so different. Almost like someone who wears glasses all the time might look if they finally take them off. It's more subtle than you think, but you realize that your perception of them includes the glasses...or the cannula. It feels foreign...wonderful foreign...when it's gone.
As for the rest of Sam, I'll admit that the adjustment off of oxygen made us hesitant and worried elsewhere. We had tried to start him on rice cereal, but his stomach and intestines seemed to react - he seemed to have a constant belly ache and a bout of constipation. He was still on three doses of Lasiks, 3 doses of Sildenafil, and 2 doses of Zantac. And from a couple visits to Dr. Pete, we were well aware that Sam's heart failure episode in December had really slowed down his weight gain. The boy, while long, was not a chunky baby. While other kids were spending time morphing into Michelin Men (and women), baby Sam was using every ounce of his energy to pump an overwhelmed heart.
Yet, for all of the struggles, it did remain that it really felt like Sam was on the road to recovery. A long road, still with perilous and sharp turns, but a road worth taking. As for the oxygen, it took me about a week to get used to a cannula free Sam. And for now...for that moment, it also felt okay to put the oxygen back on at night. It felt like were keeping that security blanket just within reach, hopefully allowing us to try to get some sleep.
Sleep...now that was something Sam wasn't willing to give to us just yet. And there was still that pesky little issue of still not officially knowing what had caused Sam's fistula in the first place. In the back of my mind, I was always expecting to never find that out...to view Sam as a fluke, and one in a billion. How very wrong I'd be.
Until next time.
Wednesday, January 08, 2014
Saving Sam (Chapter 5.01): #DrDoomyNotSoGloomy
I got the bright idea to start tweeting about Sam's first embolization on the morning of the procedure. I was wondering how I was going to actually keep people posted, when I was a wreck and knew that I might not have a blog post in me, especially depending on how Sam's procedure ended up going. I considered Facebook. But Facebook has the nasty habit of posting the most popular or most recent update, and I was sure that people trying to follow would be lost, confused, and annoyed when trying to get through their news feed to find out how things were. Elisa and I were blown away at how many messages, texts, and calls we had received, asking us to keep them posted. And then Twitter fell into my head. I've used Twitter mostly to keep up on my Utes, Saints, news, and video games information. I wasn't a big fan of actually "tweeting", as it is called. After all, who would follow me? What would I say that was interesting? So it was a quick hit news feed for me. But Twitter is built to provide information, insight, and news in bite sized pieces (140 characters, to be exact). And what a great avenue to vent about Sam and keep people posted.
I posted on Facebook about my new Twitter handle (@SuperSamUpdates). Within 30 minutes, I had 20 followers. By the end of the day, I think I was over 50. And I started tweeting. I kept people updated. I vented my own fears and frustrations. I even found unique times to be sarcastic or try to be funny. As we sat in the waiting room, my Dad, brother, and wife had created Twitter handles. And then and there...in the waiting room while Sam was getting his procedure, the Twitter War between Elisa and Brad began. For those of you familiar with Twitter, you will know that sending out a message is called "tweeting". The actual message is a "tweet". But this didn't make sense to Elisa. She took the literally name of "Twitter", and dubbed writing any messages to be "twittering". The message was called a "twitter". Yes, two days later, we found ourselves sitting at the Starbucks inside University Hospital, having a Facebook/Twitter war about tweets vs. twittering. Elisa also seemed to be vehemently against the idea of hashtags. When I tried to explain that it was a searchable function within Twitter, and a way to make further points in few characters, she scoffed. The only hashtag she seemed to understand and embrace was when I turned her comment about her drink into a classic #ittasteslikeass.
The day we were to be released from Primary's (during our second visit), however, Elisa (the Twitter rookie), struck tweeting and hashtag gold. After a visit from Dr. Doom, my phone beeped, alerting me that I had a new tweet from the Mrs. I opened it and immediately enjoyed her handiwork. The hashtag stared at me from my iphone. I laughed out loud at how perfect it was.
#DrDoomyNotSoGloomy
That was the last time we had seen or heard from Dr. Doom, until today. We left PCMC on Friday, December 13, 2013 (don't worry...I will eventually write the blog about that day...the singing neighbors need their day in the sun!). Soon after, we booked an appointment with Dr. Doom to see how Sam was doing - at the time, it felt like a long time away. In truth, it was less than a month. 26 days, to be exact. The day kind of stumbled upon us, as once we were released from the hospital, we headed directly into Lukas's 7th birthday, Christmas, New Year's, and our annual "staycation" at home. Yet, this morning, the pit in our stomachs returned. Another visit to the good doctor had arrived. And while, for the first time, we were immensely hopeful, we were also fearful...that our hopes were unfounded and we would get further bad news.
We had reason to be hopeful, though. Like an airplane slowly working its way through thick clouds, only to break through into blindly sunlight, Elisa and I had made our way home with a child we hardly recognized. How so? Like a love letter, let me count the ways:
I posted on Facebook about my new Twitter handle (@SuperSamUpdates). Within 30 minutes, I had 20 followers. By the end of the day, I think I was over 50. And I started tweeting. I kept people updated. I vented my own fears and frustrations. I even found unique times to be sarcastic or try to be funny. As we sat in the waiting room, my Dad, brother, and wife had created Twitter handles. And then and there...in the waiting room while Sam was getting his procedure, the Twitter War between Elisa and Brad began. For those of you familiar with Twitter, you will know that sending out a message is called "tweeting". The actual message is a "tweet". But this didn't make sense to Elisa. She took the literally name of "Twitter", and dubbed writing any messages to be "twittering". The message was called a "twitter". Yes, two days later, we found ourselves sitting at the Starbucks inside University Hospital, having a Facebook/Twitter war about tweets vs. twittering. Elisa also seemed to be vehemently against the idea of hashtags. When I tried to explain that it was a searchable function within Twitter, and a way to make further points in few characters, she scoffed. The only hashtag she seemed to understand and embrace was when I turned her comment about her drink into a classic #ittasteslikeass.
The day we were to be released from Primary's (during our second visit), however, Elisa (the Twitter rookie), struck tweeting and hashtag gold. After a visit from Dr. Doom, my phone beeped, alerting me that I had a new tweet from the Mrs. I opened it and immediately enjoyed her handiwork. The hashtag stared at me from my iphone. I laughed out loud at how perfect it was.
#DrDoomyNotSoGloomy
That was the last time we had seen or heard from Dr. Doom, until today. We left PCMC on Friday, December 13, 2013 (don't worry...I will eventually write the blog about that day...the singing neighbors need their day in the sun!). Soon after, we booked an appointment with Dr. Doom to see how Sam was doing - at the time, it felt like a long time away. In truth, it was less than a month. 26 days, to be exact. The day kind of stumbled upon us, as once we were released from the hospital, we headed directly into Lukas's 7th birthday, Christmas, New Year's, and our annual "staycation" at home. Yet, this morning, the pit in our stomachs returned. Another visit to the good doctor had arrived. And while, for the first time, we were immensely hopeful, we were also fearful...that our hopes were unfounded and we would get further bad news.
We had reason to be hopeful, though. Like an airplane slowly working its way through thick clouds, only to break through into blindly sunlight, Elisa and I had made our way home with a child we hardly recognized. How so? Like a love letter, let me count the ways:
- Sam's retractions, while still present, are less. Clearly he didn't working as hard when breathing, and we most notice it when we hold him (or he is napping and we watch him on the monitor). He isn't bobbing anymore.
- More to the point, Elisa, like any regular parent, has to check on Sam during naps because she can no longer tell if he is breathing (due to the lack of bobbing)
- The pulse oximeter is never close to alarming. Literally, every night, his saturations have stayed between 95-100. Without fail.
- In addition, Sam's heart rate never reaches scary levels. While sleeping, he's between 100-120. While awake, he's between 120-140. It's a beautiful thing.
- Sam's hysterical crying episodes are gone. No arching. No clawing at our faces. No out of control, inconsolable episodes. Not one.
- While not sleeping 12 hours at night, Sam's ranged between 5-8 during his largest stretch, and doesn't wake up out of control. Just hungry and wanting mommy.
- He's happy. He smiles. He has started to giggle. He's a pleasant child to be around and loves to sit and talk to us.
- He has taken to standing on his legs. He loves it - could do it for hours and gets goofy grins when he's testing the weight on his legs.
- We even started oxygen trials, taking him off of the oxygen for extended periods. Early on, we would do it for 5-15 minutes. By the time our appointment with Dr. Day rolled around, our best trial had been 35 minutes without Sam dipping below 88% oxygen saturation. The alarm didn't go off.
As you can see, hope was springing eternal. So it was half full of excitement and half full of worry that we headed into see Dr. Doom. Would our hopes be founded with good echo and x-ray results? Or would we be told that while he was doing better, the danger was still real and the levels of meds, oxygen, etc. would be staying the same? To say we were nervous was the understatement of the year.
When we arrived at PCMC, we were immediately escorted to Radiology. Like our previous 4 visits, we would be starting with a chest x-ray. Our previous experiences were all the same. Sam would scream during the x-ray and we would see pictures that were overwhelming. Literally 75% or more of his x-ray would be heart. We weren't doctors, and we always knew it was enlarged. So today, while Sam screamed on the x-ray table, I squinted at the screen. What would we see?
My first impression was that the heart was still enlarged, but it didn't look as big as the last x-ray. At that very moment, I realized how brilliant I had been in the day after Sam's surgery at PCMC. I'm not sure why, but as we walked into the room after getting coffee, the x-ray tech was leaving Sam's room and his x-ray was up on the machine. I pulled out my iPhone and snapped a picture. I remembered that I had done this during today's x-ray. I immediately pulled out the phone and texted the pictures to Elisa so I could go back and forth between the images. I had been right. As a non-medical professional, I could see a decrease in the size of Sam's heart. It wasn't normal, but it wasn't taking up his whole chest cavity. My hopes increased slightly as we headed back and waited for our exam. Usually, we headed to get an echo next. Today, we were going to meet with Dr. Doom first.
The nurse came into the room to do an EKG and while the door was still open, Dr. Doom/Day walked by and said hello. His first comment was that he had seen the x-ray, and "it looks like his heart isn't as large as it was, so that's good". He walked off. I smiled and eagerly turned my attention to what I knew was to come. Sam's oxygen saturation test (with oxygen, and then without). Sam hung out between 98-100 on oxygen. That was to be expected. And then we turned the oxygen off. I had hoped to seem him stay above 90. In the approximate 10 minute test, when he wasn't wiggling all over the place, Sam's oxygen readings stayed between 93-96. I was thrilled. Hope was really starting to grow, and I almost wanted to swat it away, fearful that I was setting myself up for disappointment. And then Dr. Doom arrived. Except, he wasn't as much Dr. Doom. He might have resembled Dr. Day.
We walked Dr. Day through the previous month - the bullet points I mentioned above, and our hope that things were improving. He showed us the previous x-ray and today's and clearly was pleased with the results. Sam's heart had gone from severely enlarged to moderately enlarged. His lungs looked cleaner as well. As a side note, after Dr. Day left, I walked up to the computer and the x-ray report that he had left on screen. It clearly stated that the "Aeration of the lungs is improved and the heart is not as enlarged as in previous x-rays". We asked him about his plans regarding Sam's medications, and especially his oxygen. He stated (and appeared) hopeful at Sam's condition and how he seemed. He couldn't believe how much he had grown. He asked "is he mostly on breastmilk?" I think he was surprised to know that he had gained 2 pounds in 26 days solely on breastmilk. That's right. Sam is now up to 14 lbs. 8 oz., while he was only 12 lb. 8 oz. on his PCMC discharge date. Yet, while Dr. Day was hopeful, he wanted to get an echo to see the results and then we could talk about what our next steps would be.
Elisa fed Sam and we got him to sleep while we waited for the echo technician. Of course, they took so long that Sam was waking (well, partly thanks to me coughing too) when they arrived. But we headed back and went through what felt like our quickest echo thus far. It couldn't have been more than 20 minutes long, and I didn't see anything on the screen that gave me pause. Not that I could read it - I just wanted to know the results. I was further amused that when the echo tech saw Sam unwrapped, she asked Elisa if he was on steroids. She was more surprised than Dr. Day to find out that breastmilk was the singular culprit of Sam's chubby cheeks and weight gain. We were ushered into our 4th room of the visit and waited for Dr. Day's final assessment.
If it feels at all like I've rushed up to this point, you'll need to forgive me. It's like leading up to Christmas morning...all the anticipation that you can't stand. Ladies and gentlemen...I present you Christmas morning. Well, at least some semblance of one.
The echocardiogram confirmed what the x-ray and Sam's bullet points of progress had indicated. The right side of Sam's heart has decreased in size. The heart is functioning normally. And while the PDA still exists, it also gives a window into the measurement of pressures between the heart and the lung vessels. You'll remember that at Sam's initial Dr. Day appointment, the pressures between the two were equal, which was a very bad sign. Dr. Day stated that the pressures in the heart were much higher ...indicating that the lung vessel pressure had significantly decreased. To sum it up, Sam's echo told us something very simple. The arrow was pointing up.
As a result, we were absolutely unprepared, floored, and excited at Dr. Day's next steps. He has instructed us to take Sam off of oxygen during the days, only giving him the 1/4 liter and cannula during the night. That's right...not a weaning down to 1/8, like we were hoping for. No oxygen. None. All day long. As long as Sam can handle it, and doesn't appear to be losing his color or struggling to breathe, the oxygen can be off during the days. I feel tears welling up in my eyes when I say that I'll soon get to see my son's face plainly for the majority of every day.
In addition, if Sam responds to the oxygen change, we can reduce the diuretic to once a day, can talk to Dr. Pete about getting on an easier/less invasive reflux medicine, and we don't need to return to see Dr. Day until April. I kept bracing myself for the doom. I kept waiting for the other shoe to drop. But I'm pleased to say that the doom didn't appear. The other shoe stayed firmly secure. We left Dr. Day's office with our best x-ray, echo, and oxygen plan that we've ever had in Sam's life.
I preface this with the reality that Sam is not healed. He is not cured. The fistula continues to flow a higher level of blood through Sam's heart. Multiple embolizations are on the horizon to take care of the fistula for once and for all. But Sam is healing. Sam is getting better. And for the first time since the second day of his life, we're starting to reduce the interventions on his heart and lungs. And today, of all days, Elisa's wonderful Twitter hashtag seems all too perfect to tell us the story of today's visit.
#DrDoomyNotSoGloomy
And we couldn't be more happy. More content. More exhaustedly proud.
And we've never been more hopeful. Because as one of our first PCMC nurses told us way back in October, "all you have is hope". Yes...well, that and a healing heart and a healing Sam.
I think it's safer to say (now more than ever) that 2014 is shaping up to be our best year yet.
Monday, December 30, 2013
Saving Sam (Chapter 4.05): Is there an echo in here?
You'll have to forgive me. The whirlwind of getting Sam home and immediately heading into Luke's 7th birthday, family emergencies, and Christmas has had a severe effect on my blogging ability. It was only today that I realized how I had left most of you hanging - in the midst of our hospital festivities, many of you are only to the point of knowing that Sam was extubated and trying to get control of his body and heart on his own. Much took place after that. Some still scary. Much of it was hopeful. A portion was downright hilarious and frightening at the same time. But Sam's story still needs to be told. Thus, we jump back into our Primary's Hospital visit #2.
We had left the hospital the night before, worried about Sam's fever and sad that we wouldn't have a nightly visitor at the hospital to afford pictures and updates for Elisa at midnight and 4:00am. We'd be going into the next day blind, and I was struck by how difficult a blind intro really was. There was a comfort to know that Sam was okay before we got there. We even had visual proof that he was hanging tough. While the logical part of my brain knew that we would have received a telephone call if something was seriously wrong, the emotional side of the brain plays greater tricks. What if something happened, but it just didn't rise to the level of a phone call? What if they were worried but wanted to tell us in person? Could he have taken a neurological step backwards while we slept? Yes, when you're a parent you live in this world. When your child is sick, your mind is dominated by the thoughts and you can't escape.
As we got to the hospital, however, it was quickly apparent that the logical part of my brain was right and there was nothing to worry about over the long evening. We found a hungry, crying boy when we arrived. He had a good night...he fought the bottle initially but then gave in. He was alert at times, very cranky when hungry, but otherwise was looking good. They seemed to be pleased with his medical progress as well, as Sam's fever had fully faded over the evening and everyone agreed that it was just a reaction to surgery. With the fear of infection out of our minds for the moment, we turned our attention to the parental review of Sam. Yes, the fever was gone and he was eating well. But Elisa and I both started to worry about a lack of smiles. Was there a hidden neurological problem that they hadn't yet found as a result of his surgery? We both talked incessantly to the little one, and smiled broadly (even though we still wanted to plug our noses at the smell of the dye). Still, no smiles that morning. It was now a worry at the forefront of our minds. Was Sam's mind going to make it through?
We sat around, trying to get Sam to smile when the neuro team stopped by for their morning check up. One of the residents felt the top of Sam's head and commented that the pressures and pulsating seemed less. I wasn't even aware that you could feel the pulsating, but the fact that he thought there was improvement was a good sign. He stated that the goal would be to check the heart and go from there. Our nurse filled in the rest. First, we would be moving to our fourth room of the visit (I was feeling well enough to joke that we would be posting Expedia reviews of our accommodations), and then we would get an echo. Depending on the results of the echo, they would look to start reducing heart medications.
As the doctors and nurses vacated our room and we moved to our new accommodations (which seemed to be getting worse and worse...which I hoped meant that we just weren't in as serious of a situation as before). We didn't have a neighbor, but this was the first room that was built to house two, separated by a small curtain. I wondered if we would keep our private home, or if we would get a new child next to us. I also wondered what it would be like to hear the beeping, parents, and prognosis of a child that wasn't mine. But I'd cross that bridge when I came to it, right? For now, it was back to looking, talking, and smiling at Sam. I wasn't getting the slightest bit of reaction out of the boy. But I was just as pleased to hear and see that Elisa had coaxed a smile out of Sam. It was brief, it was small, but it was real. And it helped push another little worry a bit farther back in our minds. Sam, by all accounts, was trying to heal.
If we were pleased with what was coming from his face and mouth, we were equally horrified at what was coming out of the other end. Whereas the day before, Elisa and I had smelled the dye from Sam's sweating and breath, today we got to experience the "scentsation" as Sam's body started to really process the dye. The result was blackish poop that smelled...well, as Elisa would say...like ass. Man, was it bad. I stick by my previous assertion that it was bad Chinese food smell, but when you put it into the context of what as in a diaper, that made the whole food thing worse. It was bad. Plug your nose bad. Consider never eating Chinese food again bad. And it just kept coming. It seemed that Sam had really started to process the stuff, and we were finding that he was pooping every hour or so. Yum. I was, at least, comforted that Elisa's "it smells like ass" comment now seemed timely and appropriate.
As we sat around, waiting for the echo technician to come in, I couldn't help but notice the progress in Sam's "rates" on the monitor. If you've never been in a hospital, you're typically watching four measurements. 3 constant, 1 periodic. The periodic one is blood pressure, usually set to test every hour. The other three, in hues of green, yellow, and blue, are the greater cause of beeps and worry. Green is the heart rate, and before Sam's surgery, it had been hovering in the 160-170 range. Yellow represented Sam's respirations - how many per minute. A typical infant was in the 30-60 range. Sam was consistently in the 50--70 range (and this was a big cause of beeps and alerts). Finally, blue showed us oxygen saturation. When he was admitted, the saturations were in the 80s. I give you these numbers as context. As I sat, waiting for the echo, I marveled at his numbers. Green...his heart rate was ranging from 95-120. Yellow...his respirations were anywhere from 20-40. Blue...his oxygen saturations were always between 96-100. At the moment, I snapped a picture of 103, 30, and 100. It was beautiful. And I was, at the moment, both amazed that the surgery had done so much good and guilt ridden that Sam had been so bad before we got him the surgery. I know...we didn't do anything wrong, but man he was struggling and we had just "accepted" so many of his symptoms as "our normal".
After taking the picture, I turned and saw the echo tech walking into the room. This was the third echo from this particular tech (which puts in perspective just how many we've had when we start having return techs). She took 15 minutes setting up the monitor and getting ready to work. Sam was in a deep sleep, so I was excited to see the results from a very calm baby. And then, 5 minutes in, she got a call. They had an emergency echo in another part of the ICU, and she was the lucky technician. 5 minutes later, Sam wasn't getting his echo and the technician was out of our room. It felt cruel. So close to start seeing results, yet now we would have to wait longer. Elisa reminded me that Sam had once been that emergency echo patient. It made me feel more guilty that I was being selfishly impatient. I love my wife - she has a way of pointing something out that I'm too blind to sometimes see. So Elisa and I settled in, and watched Sam. Elisa had visitors come from her work and went to chat with them, which only gave me time to hold Sam in a relatively quiet room. It was bliss. As I was the day before, I continued to be amazed that Sam wasn't bobbing nearly as much as before the surgery. Hope swelled inside me.
I was alone when Dr. Brockmeyer stopped by. I hadn't seen him since the surgery, but was curious to see what his temperament would be. If anything, he was less excited and pleased than the rest of the group had been. He cautioned me again that we were in this for the long haul and that Sam had a long way to go. I mentioned that a doctor earlier said he felt less pulsating in his head, and he was a bit dismissive of it, saying that it wasn't an accurate way to assess, and the echo would be the only real way to look at the progress he had made. He did say that it seemed like the first surgery had done some good, and that it was a good hope to wait as much as 6 months until the next procedure. But his visit was a reminder that doctors are all very different - and that their view of Sam, doomsday from everyone before, was now a mixed bag of what had been accomplished and what was still to come for him.
By the time Elisa had returned, so had the echo tech. This time, Sam was awake and fidgety. I was immediately worried that the test would show higher results, as he was a bit all over the place...still a good boy, but you knew it had to make the test a bit harder for the technician. As the echo proceeded, I realized just how little I still understood what was happening on the screen. It seemed liked the did something different every time, so it was hard to know if I was seeing something good or bad. I was attuned to when the technician seemed to focus on something more heavily that in previous tests. And this time, she seemed to spend a lot of time on the aorta. It brought back a new host of worries - did she see something? Was there a problem? But the bigger problem with a tech is that you get nothing from them. No words or diagnosis. Just silence in testing. So you watch their faces to see if something flashes. Elisa reminded me that when they found something on the initial ultrasound that was concerning (way back during PCMC visit #1), the tech brought in reinforcements to look. This tech did not, but it made us worry. The last thing we could handle, at this point, was news of a new heart problem.
By the time rounds had made its way to our room, we were reminded, once again, just how much was riding on this echocardiogram. From the doctor's perspective, we would take two courses of action depending on the results. If the results were poor, the heart medications would stay on and so would we at PCMC. If the results were promising, we would attempt to reduce the heart medications and start planning to move us to a regular hospital room. While the breathing, rates, and overall demeanor of Sam gave me hope, the emotional side of me just saw more time in the hospital. I hoped our worries about the aorta would prove to be unfounded. I was grateful that one doctor excused another from rounds to go find out what the echo showed. At least we wouldn't have to wait for a day to get results on Sam's heart. Before rounds ended, we did get a spot of good (and more hopeful) news. They had tested the protein in Sam's blood again (it was 1120 when admitted), and it had dropped to 941. I read up on the test that it takes a good amount of time for that protein to reduce, even if treatments are working, but I was pleased that we were back on a downward trend, as opposed to heading in the wrong direction or staying high above 1000.
As we waited for word from Cardiology, our regular nurse for the day informed us of the time crunch we were now on as we awaited results. In order to wean off of heart medications, they needed 6 hours to cut it off before the medication would work itself out of Sam's system and we would see how he was holding up. If we didn't hear on the echo (and cut down the meds) by noon, we wouldn't be moving from the ICU until at least tomorrow. Elisa and I turned our attention from Sam to the clock. Tick tock, we got closer to noon. And then, with 5 minutes to spare, we got a visit from one of the doctor's in Sam's rounds. No cardio visit yet, but she had initial results. We braced ourselves for the news.
The good news was that the echo results were positive. Sam's right ventricle function had returned to normal, clearly showing that either the heart medications or Sam's surgery was doing its job. We breathed a sigh of relief, knowing that the direction was altogether positive. We were a bit disappointed, however, to hear that we wouldn't be leaving ICU. Instead of cutting the heart medications, the cardio team wanted to wean. So we'd spend 12:00pm - 6:00pm cutting the drugs in half, and then from 6:00pm - 12:00am to have Sam off of the stuff. Only after midnight would Sam's blood pressure tests tell us if he was holding on his own. Apparently, if his blood pressures dropped, it would be a sign that it was heart meds, not his surgery, that was helping him the most. Normal blood pressure readings after the medications were out of his system would indicate that Sam was continuing to hold his own. I took the good echo and was content. But the impatient part of me wanted to move floors. I did the math in my head, and I saw one more day in ICU, maybe 2 in a regular room...and we'd be there for over a week.
But the weaning did commence. Sam's melrinone was reduced from .5 to .25. We'd sit and wait for 6 hours to see if things were continuing to progress. And at 6:00pm, they'd shut the melrinone off. I thought that would be the end of the story for the day, but we seemed to be only getting underway. First, we got a visit from Dr. Doom's cardiology nurse. She had seen the echo results and she was encouraged (although she stated 3 times that "she wasn't the doctor". She noticed the improved retractions on Sam and said that the initial echo had indeed shown that the right ventricle was working normally. I was, for the millionth time, struck at the humanity in this woman. Where Brockmeyer seemed to businesslike, and Dr. Doom is always the grim reaper, Linda, his nurse, was just warmth. She connected with Elisa as a mother, not as a patient. It was wonderful to feel. It was needed.
As we started to near 6:00pm, Elisa and I heard a lot of movement from behind the curtain (remember...this room was for two). Clearly, we would be getting a neighbor. And indeed, we did. It was a younger couple, clearly with their first child and clearly built to annoy the hell out of us. At first, they seemed friendly enough. We shared stories about our babies...they had an 11 day old that was struggling to eat/breath and they were still in diagnosis mode (in fact, they started in the ICU, moved to a regular floor, and had been sent back down). We even talked about grabbing some food later on. Unfortunately, that's where the lack of annoyance really ended.
I was a little iffy on the husband...he seemed overly friendly, and he proved it as a member of the clergy (or some religious affiliation stopped by). I was holding Sam, trying to mind my own business, when I realized that having a neighbor and only a curtain to separate us would mean I couldn't NOT listen. The husband was giving the clergy man the run down of his daughter's condition when he said something that made me laugh out loud. Only a direct quote can really convey the...special nature of his delivery.
"So, a little information about my wife and I. Spoiler alert! We happen to both be musically inclined and when my wife was in the throws of labor and it reached its peak, my wife started spontaneously singing. Now, we sing that song to her all the time and have decided that this is her theme song."
On cue, the wife started singing to the baby, I kid you not. She was singing softly, so it took a moment to place the song, but then I realized just how strange this song would seem in July. Now, it perfectly fit. In August, I wondered. She was singing Silent Night. Was this just because of the coming holidays? Oh no. The husband reinforced that this was their baby's theme song. Ummm...spoiler alert.
Back on Sam, however, through the singing and "sharing" of our neighbors, we finally heard more from Cardiology and were met with sweet news that helped us deal with the fact that we were still in ICU. Cardiology was very encouraged by the echo results and we could cut the melrinone at 6:00pm. We would need the evening to make sure Sam was holding his own, but if he did, we would be transferred to a regular room, or better yet, we would be discharged straight from the ICU. As soon as tomorrow. Suddenly, a night in the ICU with the whole "one nurse to one kid" didn't seem so bad. We could go home tomorrow. WE COULD GO HOME TOMORROW.
6:00pm came and went, and Sam was indeed taken off the Melrinone. With nothing left to do but sit and worry about what would happen at midnight, Elisa and I spent a little more time with Sam and got ready to go home (hopefully, for one last night). As our neighbor sang her 4th round of Silent Night, the phone rang and Elisa chatted with Dr. Day. As Elisa would later tweet (or twitter...it is still up for discussion), Dr. Doomy was not so gloomy. He had looked at the echo results and he even believed that Sam's lung pressures had reduced a bit. It was good news all around.
Elisa and I kissed Sam and we walked out of the ICU. We would head home for some much needed sleep, hopeful that Sam would make it through the night with good blood pressure readings, and more hopeful that our second visit might be over as soon as the next day.
Spoiler alert. I quietly hummed "Silent Night" as we rode the elevator. Hey, if you'd heard it 7 times in the span of an afternoon, it would be stuck in your head too.
We had left the hospital the night before, worried about Sam's fever and sad that we wouldn't have a nightly visitor at the hospital to afford pictures and updates for Elisa at midnight and 4:00am. We'd be going into the next day blind, and I was struck by how difficult a blind intro really was. There was a comfort to know that Sam was okay before we got there. We even had visual proof that he was hanging tough. While the logical part of my brain knew that we would have received a telephone call if something was seriously wrong, the emotional side of the brain plays greater tricks. What if something happened, but it just didn't rise to the level of a phone call? What if they were worried but wanted to tell us in person? Could he have taken a neurological step backwards while we slept? Yes, when you're a parent you live in this world. When your child is sick, your mind is dominated by the thoughts and you can't escape.
As we got to the hospital, however, it was quickly apparent that the logical part of my brain was right and there was nothing to worry about over the long evening. We found a hungry, crying boy when we arrived. He had a good night...he fought the bottle initially but then gave in. He was alert at times, very cranky when hungry, but otherwise was looking good. They seemed to be pleased with his medical progress as well, as Sam's fever had fully faded over the evening and everyone agreed that it was just a reaction to surgery. With the fear of infection out of our minds for the moment, we turned our attention to the parental review of Sam. Yes, the fever was gone and he was eating well. But Elisa and I both started to worry about a lack of smiles. Was there a hidden neurological problem that they hadn't yet found as a result of his surgery? We both talked incessantly to the little one, and smiled broadly (even though we still wanted to plug our noses at the smell of the dye). Still, no smiles that morning. It was now a worry at the forefront of our minds. Was Sam's mind going to make it through?
We sat around, trying to get Sam to smile when the neuro team stopped by for their morning check up. One of the residents felt the top of Sam's head and commented that the pressures and pulsating seemed less. I wasn't even aware that you could feel the pulsating, but the fact that he thought there was improvement was a good sign. He stated that the goal would be to check the heart and go from there. Our nurse filled in the rest. First, we would be moving to our fourth room of the visit (I was feeling well enough to joke that we would be posting Expedia reviews of our accommodations), and then we would get an echo. Depending on the results of the echo, they would look to start reducing heart medications.
As the doctors and nurses vacated our room and we moved to our new accommodations (which seemed to be getting worse and worse...which I hoped meant that we just weren't in as serious of a situation as before). We didn't have a neighbor, but this was the first room that was built to house two, separated by a small curtain. I wondered if we would keep our private home, or if we would get a new child next to us. I also wondered what it would be like to hear the beeping, parents, and prognosis of a child that wasn't mine. But I'd cross that bridge when I came to it, right? For now, it was back to looking, talking, and smiling at Sam. I wasn't getting the slightest bit of reaction out of the boy. But I was just as pleased to hear and see that Elisa had coaxed a smile out of Sam. It was brief, it was small, but it was real. And it helped push another little worry a bit farther back in our minds. Sam, by all accounts, was trying to heal.
If we were pleased with what was coming from his face and mouth, we were equally horrified at what was coming out of the other end. Whereas the day before, Elisa and I had smelled the dye from Sam's sweating and breath, today we got to experience the "scentsation" as Sam's body started to really process the dye. The result was blackish poop that smelled...well, as Elisa would say...like ass. Man, was it bad. I stick by my previous assertion that it was bad Chinese food smell, but when you put it into the context of what as in a diaper, that made the whole food thing worse. It was bad. Plug your nose bad. Consider never eating Chinese food again bad. And it just kept coming. It seemed that Sam had really started to process the stuff, and we were finding that he was pooping every hour or so. Yum. I was, at least, comforted that Elisa's "it smells like ass" comment now seemed timely and appropriate.
As we sat around, waiting for the echo technician to come in, I couldn't help but notice the progress in Sam's "rates" on the monitor. If you've never been in a hospital, you're typically watching four measurements. 3 constant, 1 periodic. The periodic one is blood pressure, usually set to test every hour. The other three, in hues of green, yellow, and blue, are the greater cause of beeps and worry. Green is the heart rate, and before Sam's surgery, it had been hovering in the 160-170 range. Yellow represented Sam's respirations - how many per minute. A typical infant was in the 30-60 range. Sam was consistently in the 50--70 range (and this was a big cause of beeps and alerts). Finally, blue showed us oxygen saturation. When he was admitted, the saturations were in the 80s. I give you these numbers as context. As I sat, waiting for the echo, I marveled at his numbers. Green...his heart rate was ranging from 95-120. Yellow...his respirations were anywhere from 20-40. Blue...his oxygen saturations were always between 96-100. At the moment, I snapped a picture of 103, 30, and 100. It was beautiful. And I was, at the moment, both amazed that the surgery had done so much good and guilt ridden that Sam had been so bad before we got him the surgery. I know...we didn't do anything wrong, but man he was struggling and we had just "accepted" so many of his symptoms as "our normal".
After taking the picture, I turned and saw the echo tech walking into the room. This was the third echo from this particular tech (which puts in perspective just how many we've had when we start having return techs). She took 15 minutes setting up the monitor and getting ready to work. Sam was in a deep sleep, so I was excited to see the results from a very calm baby. And then, 5 minutes in, she got a call. They had an emergency echo in another part of the ICU, and she was the lucky technician. 5 minutes later, Sam wasn't getting his echo and the technician was out of our room. It felt cruel. So close to start seeing results, yet now we would have to wait longer. Elisa reminded me that Sam had once been that emergency echo patient. It made me feel more guilty that I was being selfishly impatient. I love my wife - she has a way of pointing something out that I'm too blind to sometimes see. So Elisa and I settled in, and watched Sam. Elisa had visitors come from her work and went to chat with them, which only gave me time to hold Sam in a relatively quiet room. It was bliss. As I was the day before, I continued to be amazed that Sam wasn't bobbing nearly as much as before the surgery. Hope swelled inside me.
I was alone when Dr. Brockmeyer stopped by. I hadn't seen him since the surgery, but was curious to see what his temperament would be. If anything, he was less excited and pleased than the rest of the group had been. He cautioned me again that we were in this for the long haul and that Sam had a long way to go. I mentioned that a doctor earlier said he felt less pulsating in his head, and he was a bit dismissive of it, saying that it wasn't an accurate way to assess, and the echo would be the only real way to look at the progress he had made. He did say that it seemed like the first surgery had done some good, and that it was a good hope to wait as much as 6 months until the next procedure. But his visit was a reminder that doctors are all very different - and that their view of Sam, doomsday from everyone before, was now a mixed bag of what had been accomplished and what was still to come for him.
By the time Elisa had returned, so had the echo tech. This time, Sam was awake and fidgety. I was immediately worried that the test would show higher results, as he was a bit all over the place...still a good boy, but you knew it had to make the test a bit harder for the technician. As the echo proceeded, I realized just how little I still understood what was happening on the screen. It seemed liked the did something different every time, so it was hard to know if I was seeing something good or bad. I was attuned to when the technician seemed to focus on something more heavily that in previous tests. And this time, she seemed to spend a lot of time on the aorta. It brought back a new host of worries - did she see something? Was there a problem? But the bigger problem with a tech is that you get nothing from them. No words or diagnosis. Just silence in testing. So you watch their faces to see if something flashes. Elisa reminded me that when they found something on the initial ultrasound that was concerning (way back during PCMC visit #1), the tech brought in reinforcements to look. This tech did not, but it made us worry. The last thing we could handle, at this point, was news of a new heart problem.
By the time rounds had made its way to our room, we were reminded, once again, just how much was riding on this echocardiogram. From the doctor's perspective, we would take two courses of action depending on the results. If the results were poor, the heart medications would stay on and so would we at PCMC. If the results were promising, we would attempt to reduce the heart medications and start planning to move us to a regular hospital room. While the breathing, rates, and overall demeanor of Sam gave me hope, the emotional side of me just saw more time in the hospital. I hoped our worries about the aorta would prove to be unfounded. I was grateful that one doctor excused another from rounds to go find out what the echo showed. At least we wouldn't have to wait for a day to get results on Sam's heart. Before rounds ended, we did get a spot of good (and more hopeful) news. They had tested the protein in Sam's blood again (it was 1120 when admitted), and it had dropped to 941. I read up on the test that it takes a good amount of time for that protein to reduce, even if treatments are working, but I was pleased that we were back on a downward trend, as opposed to heading in the wrong direction or staying high above 1000.
As we waited for word from Cardiology, our regular nurse for the day informed us of the time crunch we were now on as we awaited results. In order to wean off of heart medications, they needed 6 hours to cut it off before the medication would work itself out of Sam's system and we would see how he was holding up. If we didn't hear on the echo (and cut down the meds) by noon, we wouldn't be moving from the ICU until at least tomorrow. Elisa and I turned our attention from Sam to the clock. Tick tock, we got closer to noon. And then, with 5 minutes to spare, we got a visit from one of the doctor's in Sam's rounds. No cardio visit yet, but she had initial results. We braced ourselves for the news.
The good news was that the echo results were positive. Sam's right ventricle function had returned to normal, clearly showing that either the heart medications or Sam's surgery was doing its job. We breathed a sigh of relief, knowing that the direction was altogether positive. We were a bit disappointed, however, to hear that we wouldn't be leaving ICU. Instead of cutting the heart medications, the cardio team wanted to wean. So we'd spend 12:00pm - 6:00pm cutting the drugs in half, and then from 6:00pm - 12:00am to have Sam off of the stuff. Only after midnight would Sam's blood pressure tests tell us if he was holding on his own. Apparently, if his blood pressures dropped, it would be a sign that it was heart meds, not his surgery, that was helping him the most. Normal blood pressure readings after the medications were out of his system would indicate that Sam was continuing to hold his own. I took the good echo and was content. But the impatient part of me wanted to move floors. I did the math in my head, and I saw one more day in ICU, maybe 2 in a regular room...and we'd be there for over a week.
But the weaning did commence. Sam's melrinone was reduced from .5 to .25. We'd sit and wait for 6 hours to see if things were continuing to progress. And at 6:00pm, they'd shut the melrinone off. I thought that would be the end of the story for the day, but we seemed to be only getting underway. First, we got a visit from Dr. Doom's cardiology nurse. She had seen the echo results and she was encouraged (although she stated 3 times that "she wasn't the doctor". She noticed the improved retractions on Sam and said that the initial echo had indeed shown that the right ventricle was working normally. I was, for the millionth time, struck at the humanity in this woman. Where Brockmeyer seemed to businesslike, and Dr. Doom is always the grim reaper, Linda, his nurse, was just warmth. She connected with Elisa as a mother, not as a patient. It was wonderful to feel. It was needed.
As we started to near 6:00pm, Elisa and I heard a lot of movement from behind the curtain (remember...this room was for two). Clearly, we would be getting a neighbor. And indeed, we did. It was a younger couple, clearly with their first child and clearly built to annoy the hell out of us. At first, they seemed friendly enough. We shared stories about our babies...they had an 11 day old that was struggling to eat/breath and they were still in diagnosis mode (in fact, they started in the ICU, moved to a regular floor, and had been sent back down). We even talked about grabbing some food later on. Unfortunately, that's where the lack of annoyance really ended.
I was a little iffy on the husband...he seemed overly friendly, and he proved it as a member of the clergy (or some religious affiliation stopped by). I was holding Sam, trying to mind my own business, when I realized that having a neighbor and only a curtain to separate us would mean I couldn't NOT listen. The husband was giving the clergy man the run down of his daughter's condition when he said something that made me laugh out loud. Only a direct quote can really convey the...special nature of his delivery.
"So, a little information about my wife and I. Spoiler alert! We happen to both be musically inclined and when my wife was in the throws of labor and it reached its peak, my wife started spontaneously singing. Now, we sing that song to her all the time and have decided that this is her theme song."
On cue, the wife started singing to the baby, I kid you not. She was singing softly, so it took a moment to place the song, but then I realized just how strange this song would seem in July. Now, it perfectly fit. In August, I wondered. She was singing Silent Night. Was this just because of the coming holidays? Oh no. The husband reinforced that this was their baby's theme song. Ummm...spoiler alert.
Back on Sam, however, through the singing and "sharing" of our neighbors, we finally heard more from Cardiology and were met with sweet news that helped us deal with the fact that we were still in ICU. Cardiology was very encouraged by the echo results and we could cut the melrinone at 6:00pm. We would need the evening to make sure Sam was holding his own, but if he did, we would be transferred to a regular room, or better yet, we would be discharged straight from the ICU. As soon as tomorrow. Suddenly, a night in the ICU with the whole "one nurse to one kid" didn't seem so bad. We could go home tomorrow. WE COULD GO HOME TOMORROW.
6:00pm came and went, and Sam was indeed taken off the Melrinone. With nothing left to do but sit and worry about what would happen at midnight, Elisa and I spent a little more time with Sam and got ready to go home (hopefully, for one last night). As our neighbor sang her 4th round of Silent Night, the phone rang and Elisa chatted with Dr. Day. As Elisa would later tweet (or twitter...it is still up for discussion), Dr. Doomy was not so gloomy. He had looked at the echo results and he even believed that Sam's lung pressures had reduced a bit. It was good news all around.
Elisa and I kissed Sam and we walked out of the ICU. We would head home for some much needed sleep, hopeful that Sam would make it through the night with good blood pressure readings, and more hopeful that our second visit might be over as soon as the next day.
Spoiler alert. I quietly hummed "Silent Night" as we rode the elevator. Hey, if you'd heard it 7 times in the span of an afternoon, it would be stuck in your head too.
Monday, December 16, 2013
Saving Sam (Chapter 4.04): Matters of the heart and head
You would have thought that, after a day like "the hardest one", we would have slept like, well, babies. But it didn't seem to be the case for either of us. Sleep was restless...there was a feeling of nerves that were present but quite different from the previous day. I liken it to acute worry vs. chronic. Tuesday, our focus and energy was about the potential of losing Sam. There was a chance that he wouldn't survive, or that we would be told nothing could be done. Even on Thursday, our favorite Dr. Day Nurse Coordinator shared that the overwhelming sense heading into surgery was that we were in a "doomsday scenario". Waking up on Wednesday contained the nerves of what might be with a still breathing Sam. Was his leg holding up? Would they be able to extubate? And most importantly, would the heart and head be alright? From a head/brain perspective, we were hoping for everything being the same as before the surgery. For the heart, we needed to see improvement. Both were critical. We weren't sure what order we would get information - for the head, or for the heart.
Elisa's friend had been nice enough to check on Sam again, and there was a level of comfort in getting pictures and texts. Initial words from the friend were positive. His heart rate had improved by 30% from the previous day, he seemed to be moving all of his extremities, and his oxygen saturations were strong. In fact, Sam was quite feisty. He was not a fan of the breathing tube. He wanted it out. He wanted to do it on his own. They had been resourceful. They cute a bink in half, which allowed Sam to suck while still being intubated. The nurse, later in the day, would tell us that he was the first child she had ever seen take a bink while intubated. The 4:00am picture gave me more sense of hope - it was a picture that really showed Sam's eyes. He was staring into the camera with a look that plainly said "and who are you?" But they were so different than the cute but foreign alien eyes I had seen the night before. These were Sam's eyes. I had immediate hope for the "head" part of the equation. We headed to the hospital, wanting as many answers as we could find.
Yet, upon arrival, we were quickly whisked away. No, Sam wasn't in trouble. He was getting fussy at the sound of Elisa's voice. Clearly, the boy wanted the tube out and some of momma's milk. We thought it best to keep him as calm as possible, so we headed to get some breakfast and give him some more time to rest. We did find out that Sam had a good night, and they found no unusual bleeding. His extremities were moving well (all of them), and his eyes were alert and moving together. Apparently, they were so happy with his progress that they had cancelled the MRA (it's an MRI...but of the vessels in the head) in favor of a simple head ultrasound. We were pleased at that positive report, considering that the previous day had been so melancholy. On the way to breakfast, we ran into the Neuro guys from PCMC and the University of Utah. They repeated their happiness with his progress and the lack of need for the MRA.
After breakfast, we returned to find them just starting the head ultrasound. Again, in an effort to keep his fussiness to a minimum, we went off to find the fabled Starbucks that was supposed to reside somewhere in University Hospital. While we got our mochas, Elisa and I had a war on Facebook about Twitter. Social Networking professionals must have been flummoxed at the irony of arguing in such a way. After we had our first coffee (there would be 3-4 today), we headed back to find a sleeping Sam. The ultrasound was done and they were just waiting for results. So it appeared we would know more of his head than his heart to start the day. If the ultrasound results were satisfactory enough, they would move to extubate. In an effort to be prepared, they had Sam do a trial run, where he was still intubated but was breathing on his own. He passed that test with flying colors.
While he was cleared to be extubated, the act of doing so wasn't happening. Sam was the first to protest. He wanted those tubs out. You could see, as he reached for his face, that the tubes were bothering. His crying was bothering me - because it was a silent cry. Literally, face balled up and tears come from his eyes. And no sound. It was unnerving, to say the least. I guess we use the sound of crying to determine the severity. Without that, it just looked awful. Luckily, we had just the cure for our worries and sadness as we waited for extubation. Once Sam was back asleep (still sucking on that half binky), Miles came to visit. Elisa and I escaped while Grandma got some time with Sam, and we had some milk and cookies with the little man. He loudly talked about Christmas and his favorite toys in the playroom, leading to discussions with a parent in the Ronald McDonald house about our kids. I'm always struck at how quickly we seem to be able to engage and bond with fellow ICU parents. This experience is so unique, only those that have been through it can understand it. But when you do, you DO.
After a nice visit, we returned to Sam to find out that extubation was ready to happen. They offered Elisa and I the opportunity to be right next to him when the pulled out the tube. Interestingly enough, we couldn't be right there. We stood back at the nurses's station and I looked away. They must be good, because when I looked back, the tube was gone and Sam was getting a mist through a mask to provide immediate help to his swollen throat. He struggled at first - he could cry (weakly), but you could tell that this body was finally realizing that it was under attack and was being forced to do the work on its own. Slowly, he regained control and I got to marvel a bit at how different Sam looked without a nasal cannula. The difference is striking - I have such a beautiful baby boy, but the nasal cannula tells you something is wrong. Without it, he looked delightfully normal. And then something fascinating happened. As Sam recovered, the doctors and nurses around him started to worry that he was retracting. They'd see him pull in with every breath and were convinced he was struggling. They made plans to put him back on the high flow nasal cannula. We, on the other hand, marveled at his retractions. You see, Sam has retracted with every breath since he was born. It took us telling the nurses for them to realize that this was baseline. And what we saw was comforting and surprising. Sam's retractions, while present, didn't seem as big. Before, with every breath, you would see his head bob up and down. He was bobbing a bit, but nothing like before. Could it be that the surgery was doing more than simply getting him out of heart failure?
Elisa soon got her wish to hold Sam, although we were now on the clock to wait 6 hours before we could try to feed him. When she held him tight, she noted how different his retractions felt. We were hopeful that, even on a higher oxygen (they still opted for high flow), perhaps his breathing wouldn't be nearly as hard for him to handle. I personally thought Sam could have moved directly to low flow. But the doctors were nervous and wanted to make sure. Honestly, the most disappointing part of the whole high flow/low flow debate was the realization that Sam couldn't leave PICU until he was off of high flow. That's right. A day after surgery, we started having visions of going to the regular floor. And I loved that I was disappointed that things weren't moving fast enough. Sam was proving, once again, just what kind of fighter he was becoming, so early in life.
I was next struck by the irony of the ultrasound tech returning for more scans. One of the reasons we were waiting for extubation all morning was to ensure the ultrasound was good enough. We got the word that it was and extubation took place. Now, he was back saying that they needed more scans. Nothing had been found on the first that was concerning, but there were pictures they wanted that they hadn't gotten in the first view. It cracked me up that Sam was sleeping on Elisa's lap while the tech scanned his head. Elisa commented again that Sam's head wasn't bobbing nearly as much as he slept. Hope, like a small balloon, began to swell inside of me. Yet, if hope was being inhaled, Sam's pungent odors were causing rapid exhalation. The dye used in the embolization procedure was now leaving Sam's body - through farts, breathing, and even secretions (sweating it out!). It took me the better part of the day to finally determine what it smelled like. My best description would be "really bad chinese". No, not "stinky chinese". Like almost rotten chinese. So Elisa (and I, while holding him later on), angled our heads away from Sam and out towards the nurses station. That's where the fresh air was located. Yet, this causes the nurses to inquire as to what we needed. It looked like we were staring at them. No, we weren't. Just trying to find good air, ladies and gents. And while I tried to escape the bad chinese, Elisa went back to the day before, during surgery. It simply smelled like ass. I immediately wondered if Anna, her cousin, would describe the smell as sour.
I wish the smell was the only worry on our mind about Sam, but it wasn't. Soon after we got to hold him, Elisa started to notice that Sam felt warm. At first, I thought maybe it was just the stink and the secretions - maybe it was just toxic and it made his body warm up. Perhaps, he was just snuggled in too tightly. But when the nurse checked his temp, he had a slight fever (101). We were both disappointed. It felt like throwing another log onto the fire - one more thing to manage and be worried about. What did the fever mean? Was he sick? In trouble? Struggling? And all we would get was the unhelpful "it's not uncommon" response from practitioners. What does that even mean? Interestingly, their belief that it wasn't a big deal seemed different after lunch. When we returned to see Sam, they had taken blood and were testing for all sort of viruses that he could have picked up. I worried that this would put him under stress or keep us in ICU. And then two visitors calmed my fears. The first was from Dr. Tosky. He came to see how Sam was, and stressed again that we had a long haul ahead of us. But when I told him about the fever, his comment was "yeah, that's because of us". He fully believed it was a reaction to surgery and nothing more. He thoughtfully left me with the comment that Sam "is doing really, really well". Yes he was. Soon after, the nurse from neurosurgery came to check on Sam and had the exact same response to the fever as Tosky. She explained that infection from surgery wouldn't appear for 4-5 days. This was too soon - it was the body's reaction to the trauma of surgery. It helped me breathe a little more evenly.
As we sat around, we started wondering what happened next. It felt clear to me that Sam's head and neurological progress was positive. I wanted to know about his heart. Unfortunately, we found out that his heart news would have to wait. Dr. Day wasn't really in a rush to get another echo. He wanted to give the heart time to heal a bit. The echo would happen the next day, along with a new test of the protein in his blood. We were hoping for a decrease. So while the heart wouldn't be solved today, we put on our own doctor equipment and started talking about his progress that we saw. It was clear, hours after extubation, that the retractions weren't a fluke. They were still there, mind you, but the head bob was nearly gone. We could hold Sam and not feel like we had a mexican jumping bean in our arms. Put him on the shoulder and his head stayed next to mine. I remembered his head moving up and down next to mine in the previous months of his life. And then I touched his chest.
Of all things that I beat myself up about (when it comes to not getting Sam in sooner), it's this sign. From the day he was born, you could really feel Sam's heart beating out of his chest. It was so noticeable that our pediatrician thought he might have a heart condition (remember way back in the first Sam's story?), and it never really left. In the days before we went to PCMC, I felt his heart more than ever before. I thought it was just because he was bigger. I'm now sure that his heart was simply running out of room. It was lodged between his spine and his ribcage, and though I felt it, I didn't act. I felt ashamed. But as I held Sam, and placed my hand over his heart, I initially couldn't even feel the beating. I had to patiently wait and then I could feel it - maybe a smidge more than when I put my hand on Luke's chest. But it was definitely a decrease. In my mind, I believe his heart is shrinking. Hopefully one day, I'll get verifiable proof in x-ray format.
As Sam got near time to eat, he also continued to wean off of high flow. Before we knew it, the respiratory therapist was replacing the high flow with low flow, and Sam was back to 2 L of 50% oxygen. One more hurdle out of the way in our hopes to go to the floor. And then Elisa got the go ahead to feed Sam. To say that he was eager was the understatement of our stay. He latched immediately and ate aggressively for 8 minutes. Elisa burped him and was about to switch sides when the nurse said she had to stop. He had to be restricted before he could resume full eating. Elisa was pissed. Sam was livid. He had started to eat again, and had to wait another hour to eat more. He let everyone around him know of his displeasure. After a successful eating episode an hour later, they seemed to relax the restrictions and Sam could eat as normally. Except it wasn't normal. It was better. In the past, Sam would suck, breathe, suck, breathe, suck, breathe, breathe, breathe. It was like he needed to recover. Now, there was a more natural cadence to his eating - and not a lot of stopping to get his breath.
As our day started to wrap up, Elisa and I started to glow with pride at our little lion cub. He was roaring so loudly...as in showing signs of improvement. I couldn't stop staring at his retractions. I couldn't move my hand from over his heart. And when the nurses said they were "prepping" for us to go to the floor the next day, I stood in awe. I secretly believe that the nurses and doctors were in awe too. The day before had been full of doomsday. I sensed that many weren't sure that Sam would return from University Hospital, and that others thought he would come back in really bad shape. Sam was proving his doubters wrong, and us right in refusing to say goodbye, but instead offering him a bunch of "see you soons". Sam was recovering. His head was clearly showing signs of stablization. And although we weren't sure yet, I was starting to believe in the signs that his heart was responding as well.
We said goodnight to our little man, and headed home for another evening. After all, if we were going to the floor, we'd need sleep. We'd have to start doing a lot more work out of the ICU. Sam was clearly proving his doubters wrong, and we needed to be ready for him to do it the next day...when we turned to matters of his heart. When we would start to understand if heart "failure" was a current predicament or a thing of Sam's past.
Elisa's friend had been nice enough to check on Sam again, and there was a level of comfort in getting pictures and texts. Initial words from the friend were positive. His heart rate had improved by 30% from the previous day, he seemed to be moving all of his extremities, and his oxygen saturations were strong. In fact, Sam was quite feisty. He was not a fan of the breathing tube. He wanted it out. He wanted to do it on his own. They had been resourceful. They cute a bink in half, which allowed Sam to suck while still being intubated. The nurse, later in the day, would tell us that he was the first child she had ever seen take a bink while intubated. The 4:00am picture gave me more sense of hope - it was a picture that really showed Sam's eyes. He was staring into the camera with a look that plainly said "and who are you?" But they were so different than the cute but foreign alien eyes I had seen the night before. These were Sam's eyes. I had immediate hope for the "head" part of the equation. We headed to the hospital, wanting as many answers as we could find.
Yet, upon arrival, we were quickly whisked away. No, Sam wasn't in trouble. He was getting fussy at the sound of Elisa's voice. Clearly, the boy wanted the tube out and some of momma's milk. We thought it best to keep him as calm as possible, so we headed to get some breakfast and give him some more time to rest. We did find out that Sam had a good night, and they found no unusual bleeding. His extremities were moving well (all of them), and his eyes were alert and moving together. Apparently, they were so happy with his progress that they had cancelled the MRA (it's an MRI...but of the vessels in the head) in favor of a simple head ultrasound. We were pleased at that positive report, considering that the previous day had been so melancholy. On the way to breakfast, we ran into the Neuro guys from PCMC and the University of Utah. They repeated their happiness with his progress and the lack of need for the MRA.
After breakfast, we returned to find them just starting the head ultrasound. Again, in an effort to keep his fussiness to a minimum, we went off to find the fabled Starbucks that was supposed to reside somewhere in University Hospital. While we got our mochas, Elisa and I had a war on Facebook about Twitter. Social Networking professionals must have been flummoxed at the irony of arguing in such a way. After we had our first coffee (there would be 3-4 today), we headed back to find a sleeping Sam. The ultrasound was done and they were just waiting for results. So it appeared we would know more of his head than his heart to start the day. If the ultrasound results were satisfactory enough, they would move to extubate. In an effort to be prepared, they had Sam do a trial run, where he was still intubated but was breathing on his own. He passed that test with flying colors.
While he was cleared to be extubated, the act of doing so wasn't happening. Sam was the first to protest. He wanted those tubs out. You could see, as he reached for his face, that the tubes were bothering. His crying was bothering me - because it was a silent cry. Literally, face balled up and tears come from his eyes. And no sound. It was unnerving, to say the least. I guess we use the sound of crying to determine the severity. Without that, it just looked awful. Luckily, we had just the cure for our worries and sadness as we waited for extubation. Once Sam was back asleep (still sucking on that half binky), Miles came to visit. Elisa and I escaped while Grandma got some time with Sam, and we had some milk and cookies with the little man. He loudly talked about Christmas and his favorite toys in the playroom, leading to discussions with a parent in the Ronald McDonald house about our kids. I'm always struck at how quickly we seem to be able to engage and bond with fellow ICU parents. This experience is so unique, only those that have been through it can understand it. But when you do, you DO.
After a nice visit, we returned to Sam to find out that extubation was ready to happen. They offered Elisa and I the opportunity to be right next to him when the pulled out the tube. Interestingly enough, we couldn't be right there. We stood back at the nurses's station and I looked away. They must be good, because when I looked back, the tube was gone and Sam was getting a mist through a mask to provide immediate help to his swollen throat. He struggled at first - he could cry (weakly), but you could tell that this body was finally realizing that it was under attack and was being forced to do the work on its own. Slowly, he regained control and I got to marvel a bit at how different Sam looked without a nasal cannula. The difference is striking - I have such a beautiful baby boy, but the nasal cannula tells you something is wrong. Without it, he looked delightfully normal. And then something fascinating happened. As Sam recovered, the doctors and nurses around him started to worry that he was retracting. They'd see him pull in with every breath and were convinced he was struggling. They made plans to put him back on the high flow nasal cannula. We, on the other hand, marveled at his retractions. You see, Sam has retracted with every breath since he was born. It took us telling the nurses for them to realize that this was baseline. And what we saw was comforting and surprising. Sam's retractions, while present, didn't seem as big. Before, with every breath, you would see his head bob up and down. He was bobbing a bit, but nothing like before. Could it be that the surgery was doing more than simply getting him out of heart failure?
Elisa soon got her wish to hold Sam, although we were now on the clock to wait 6 hours before we could try to feed him. When she held him tight, she noted how different his retractions felt. We were hopeful that, even on a higher oxygen (they still opted for high flow), perhaps his breathing wouldn't be nearly as hard for him to handle. I personally thought Sam could have moved directly to low flow. But the doctors were nervous and wanted to make sure. Honestly, the most disappointing part of the whole high flow/low flow debate was the realization that Sam couldn't leave PICU until he was off of high flow. That's right. A day after surgery, we started having visions of going to the regular floor. And I loved that I was disappointed that things weren't moving fast enough. Sam was proving, once again, just what kind of fighter he was becoming, so early in life.
I was next struck by the irony of the ultrasound tech returning for more scans. One of the reasons we were waiting for extubation all morning was to ensure the ultrasound was good enough. We got the word that it was and extubation took place. Now, he was back saying that they needed more scans. Nothing had been found on the first that was concerning, but there were pictures they wanted that they hadn't gotten in the first view. It cracked me up that Sam was sleeping on Elisa's lap while the tech scanned his head. Elisa commented again that Sam's head wasn't bobbing nearly as much as he slept. Hope, like a small balloon, began to swell inside of me. Yet, if hope was being inhaled, Sam's pungent odors were causing rapid exhalation. The dye used in the embolization procedure was now leaving Sam's body - through farts, breathing, and even secretions (sweating it out!). It took me the better part of the day to finally determine what it smelled like. My best description would be "really bad chinese". No, not "stinky chinese". Like almost rotten chinese. So Elisa (and I, while holding him later on), angled our heads away from Sam and out towards the nurses station. That's where the fresh air was located. Yet, this causes the nurses to inquire as to what we needed. It looked like we were staring at them. No, we weren't. Just trying to find good air, ladies and gents. And while I tried to escape the bad chinese, Elisa went back to the day before, during surgery. It simply smelled like ass. I immediately wondered if Anna, her cousin, would describe the smell as sour.
I wish the smell was the only worry on our mind about Sam, but it wasn't. Soon after we got to hold him, Elisa started to notice that Sam felt warm. At first, I thought maybe it was just the stink and the secretions - maybe it was just toxic and it made his body warm up. Perhaps, he was just snuggled in too tightly. But when the nurse checked his temp, he had a slight fever (101). We were both disappointed. It felt like throwing another log onto the fire - one more thing to manage and be worried about. What did the fever mean? Was he sick? In trouble? Struggling? And all we would get was the unhelpful "it's not uncommon" response from practitioners. What does that even mean? Interestingly, their belief that it wasn't a big deal seemed different after lunch. When we returned to see Sam, they had taken blood and were testing for all sort of viruses that he could have picked up. I worried that this would put him under stress or keep us in ICU. And then two visitors calmed my fears. The first was from Dr. Tosky. He came to see how Sam was, and stressed again that we had a long haul ahead of us. But when I told him about the fever, his comment was "yeah, that's because of us". He fully believed it was a reaction to surgery and nothing more. He thoughtfully left me with the comment that Sam "is doing really, really well". Yes he was. Soon after, the nurse from neurosurgery came to check on Sam and had the exact same response to the fever as Tosky. She explained that infection from surgery wouldn't appear for 4-5 days. This was too soon - it was the body's reaction to the trauma of surgery. It helped me breathe a little more evenly.
As we sat around, we started wondering what happened next. It felt clear to me that Sam's head and neurological progress was positive. I wanted to know about his heart. Unfortunately, we found out that his heart news would have to wait. Dr. Day wasn't really in a rush to get another echo. He wanted to give the heart time to heal a bit. The echo would happen the next day, along with a new test of the protein in his blood. We were hoping for a decrease. So while the heart wouldn't be solved today, we put on our own doctor equipment and started talking about his progress that we saw. It was clear, hours after extubation, that the retractions weren't a fluke. They were still there, mind you, but the head bob was nearly gone. We could hold Sam and not feel like we had a mexican jumping bean in our arms. Put him on the shoulder and his head stayed next to mine. I remembered his head moving up and down next to mine in the previous months of his life. And then I touched his chest.
Of all things that I beat myself up about (when it comes to not getting Sam in sooner), it's this sign. From the day he was born, you could really feel Sam's heart beating out of his chest. It was so noticeable that our pediatrician thought he might have a heart condition (remember way back in the first Sam's story?), and it never really left. In the days before we went to PCMC, I felt his heart more than ever before. I thought it was just because he was bigger. I'm now sure that his heart was simply running out of room. It was lodged between his spine and his ribcage, and though I felt it, I didn't act. I felt ashamed. But as I held Sam, and placed my hand over his heart, I initially couldn't even feel the beating. I had to patiently wait and then I could feel it - maybe a smidge more than when I put my hand on Luke's chest. But it was definitely a decrease. In my mind, I believe his heart is shrinking. Hopefully one day, I'll get verifiable proof in x-ray format.
As Sam got near time to eat, he also continued to wean off of high flow. Before we knew it, the respiratory therapist was replacing the high flow with low flow, and Sam was back to 2 L of 50% oxygen. One more hurdle out of the way in our hopes to go to the floor. And then Elisa got the go ahead to feed Sam. To say that he was eager was the understatement of our stay. He latched immediately and ate aggressively for 8 minutes. Elisa burped him and was about to switch sides when the nurse said she had to stop. He had to be restricted before he could resume full eating. Elisa was pissed. Sam was livid. He had started to eat again, and had to wait another hour to eat more. He let everyone around him know of his displeasure. After a successful eating episode an hour later, they seemed to relax the restrictions and Sam could eat as normally. Except it wasn't normal. It was better. In the past, Sam would suck, breathe, suck, breathe, suck, breathe, breathe, breathe. It was like he needed to recover. Now, there was a more natural cadence to his eating - and not a lot of stopping to get his breath.
As our day started to wrap up, Elisa and I started to glow with pride at our little lion cub. He was roaring so loudly...as in showing signs of improvement. I couldn't stop staring at his retractions. I couldn't move my hand from over his heart. And when the nurses said they were "prepping" for us to go to the floor the next day, I stood in awe. I secretly believe that the nurses and doctors were in awe too. The day before had been full of doomsday. I sensed that many weren't sure that Sam would return from University Hospital, and that others thought he would come back in really bad shape. Sam was proving his doubters wrong, and us right in refusing to say goodbye, but instead offering him a bunch of "see you soons". Sam was recovering. His head was clearly showing signs of stablization. And although we weren't sure yet, I was starting to believe in the signs that his heart was responding as well.
We said goodnight to our little man, and headed home for another evening. After all, if we were going to the floor, we'd need sleep. We'd have to start doing a lot more work out of the ICU. Sam was clearly proving his doubters wrong, and we needed to be ready for him to do it the next day...when we turned to matters of his heart. When we would start to understand if heart "failure" was a current predicament or a thing of Sam's past.
Subscribe to:
Posts (Atom)