It shot directly up my arm, like an electric shock. And although it only lasted the fraction of a second, it felt like time slowed to a crawl. Enough that I wondered if I had felt stretching, tearing, or breaking. Enough that Elisa had called out, wondering if I'd done damage to more than myself. Enough that I was able to adjust for Sam's patented arch and twist move, and end up protecting him with room to spare. But I won't lie - I knew immediately that this wouldn't be the type of thing that a coach would tell you to "shake it out". Nor were we in a conducive time of day that I could address it immediately. Instead, I tried the coach's silent suggestion anyway. I shook it off. I wrapped Sam in his miracle blanket a bit too quickly...he looked like a poor attempt at wrapping up a burrito. Still, he went back into his bassinet, Elisa turned off her light, and I tried to use the light from the bathroom to assess the damage. It all seemed normal (well, except for the throbbing pain). I turned off the light, headed back to bed, and laid down. I kept feeling the point of injury. I found that if I wrapped my pillow around it at the right angle, the pain would lessen. 3 minutes later, I was up to get some Tylenol. 5 minutes later, I was trying my best to drift off to sleep. I couldn't help but chuckle to myself. Somehow, some way, I'd done the reverse of the old cliche. I'd patented the approach to adding injury to insult.
But to understand the injury, you must first understand the insult. But our story starts before that. It starts with a victory. When we last left you, I was having my adult tantrum towards Dr. Brockmeyer. After having a positive meeting where we finally had a plan (albeit delayed until January), we were blindsided by a scheduled MRI before our next meeting. Don't get me wrong. I'm all for modern medicine, and I could almost see the inherent value in having an updated MRI as Dr. Brockmeyer and Tosky descended upon Sam for actual treatment of his fistula. But I was also reminded of Brockmeyer's choice words during our last in-person visit - no more MRIs because we wanted to reduce the wear and tear on Sam's body in preparation for the real trauma when fixing his brain.
The day we found out about the January plan and MRI, I spoke to Brockmeyer's nurse. I pointedly wanted to know why we had dissonance between wear and tear and a new MRI. Three days passed before I attempted again. No call from the nurse. No call from Brockmeyer. While I felt infinitely more grateful to Brockmeyer and PCMC than I had the St. Mark's crew (hence the appearance of the lion and lioness), I still felt the growl start to grow. I understand that Doctors are busy. They see hundreds of patients in a year, so it is hard to keep things straight. But I wish doctors would see the world from a parent's view. We cling to every word, appointment, received (or missed) telephone call, or diagnosis. 3 days of silence only made me mad. We wanted to know why. If you haven't kept up on the blog, you might be wondering why we're so against the return of another MRI. Sam didn't react well to the intubation, nor did he come well out of the anesthesia. A week later, and we discovered Sam had a virus that was simply exacerbating the reaction. It wasn't easy at all. I didn't want to go through a needless repeat. I was also worried that Sam's recovery from a MRI might further delay their action on Sam's fistula. I didn't want to hear that we were heading into February because he needed full recovery from being intubated again.
Apparently, however, my second voicemail did the trick. A couple hours after I had left it, Brockmeyer's nurse called me back. She explained that first he had been out of the office. Then, he avoided answering her question (sent via email). She had finally found a moment to discuss it with him, and the answer was actually surprising (and I felt a tremendous sense of victory). I braced for the news that Brockmeyer was worried about further growth. I steeled my nerves to fight the whole "well, two more months will have passed", considering it was their choice to delay. But my bracing and steeling was for naught. Because Dr. Brockmeyer's reaction was altogether different. He...agreed with me. Apparently, when reminded of his original comments, his response was "you know, I thought it might be helpful to have the latest scans, but he's right. We don't need to do it. Cancel the MRI." I think the nurse was bemused when my immediate question was "really?!" So the more subtle lion approach had worked. I pushed ever so slightly on the new diagnosis/plan, and was met with partnership and agreement. It was further proof of every parent's reality (even if they forget). We're the parents. Our voice matters. And for the good of our kids, we must find and use that voice.
It would be nice if the update ended there, but you're probably still perplexed at the whole "adding injury to insult". The insult itself is more straightforward. The injury - well, that's me being me. While Sam's sleeping habits hadn't been ideal before the last MRI, they had become downright unpredictable and the lack of sleep was an insult to our bodies and minds. One night, Sam had given us a tremendous gift. He slept soundly from 9PM to 3:30AM. The 6.5 hours was the longest stretch of his young life, and even after a 3:30AM feeding, we both felt refreshed the next day. After all, he had crashed for another 3 hours and our day seemed to just be off to a better start. But for every step forward, there have been countless steps back. The next night, Sam woke up to eat three times and I personally had crawled out of bed 20 times to re-insert the binky into his mouth. Two more nights of the same restless sleep, I was falling into the habit of pounding 3 cups of coffee every morning, and the delirious haze of a lack of sleep was starting to set in.
I started to complain about Sam's reliance on the bink at night, so Elisa and I aligned on the decision to not use the thing like a plug. We'd only introduce it if Sam got especially upset. In fact, it seemed to work. The problem was Sam's continuing battle with his virus. Sometimes, while quietly laying around, his breathing would be silent. Other times, the rattle in his throat would be markedly pronounced, inducing a lot of sympathetic throat clearing from me. But the moment that the lack of bink management had started to kick in, Sam started his screaming fits. They're out of control - he arches, screams, twists, turns, and woe to the person that encounters one of these fits when he's wrapped like the burrito in our miracle blanket. I've become an expert on unwrapping him in 3.2 seconds to try to get him under control. We've found that holding him on our chest, with his cheek next to ours, singing "we love you Sammie, oh yes we do...", while walking. Yes, every parent will understand this. I liken it most to the weird ass things that guys will do to superstitiously influence a sporting event. No, we aren't wearing underwear on our heads, and I didn't stop shaving since the 6.5 hour glory evening. But we've found a routine that we've convinced ourselves works.
But the insult of no sleep manifested itself in two new ways - first with Elisa. The poor girl, having been through enough already, came down with a cold. Sore throat, nasal congestion, runny nose. It's be enough being sleep deprived when you're healthy. It's something altogether different when you're sick. It didn't help that the stomach bug swept through Miles and Lukas over the weekend as well. That adds another element of exhaustion. At one point over the weekend, Sam was hysterically crying, Miles was crying out for help to get off of the toilet, and Lukas was throwing up his dinner in another bathroom. And we had three kids why? :)
Elisa and I were thoroughly insulted. It felt like one every time we would go to sleep. But at least we had our victory to balance things out, and I would have been content to battle through the sleeplessness with a lack of MRI firmly in our grasp. I just wasn't expecting that this group of seemingly unrelated items would converge into my hand. Yes, the dastardly forces attacked an appendage at about 12:47AM this morning (Wednesday). Give our take a few seconds. Sam had been relatively quiet until a little after 12:40AM. And he went from happily sleeping to uncontrolled crying like the flip of a switch. In my exhaustion, I was slow to respond. Elisa was the first up but soon realized Sam's crying was escalating quickly. She asked me to take over, as her cold had made her feel dizzy. I took Sam in my arms and tried my best to fall back into the cheek-to-cheek, pacing, singing solution. After about 6 minutes, it seemed to be working. I was able to move him back to a normal holding position, and had started to think we could maybe put him back to sleep. The problem was that in my 3.2 second unwrapping, I carelessly had tossed the miracle blanket to the floor. My first thought was to kick it up onto the bed. My sleepy demeanor ended that dream, so I thought I would just bend down and grab it. I chose the wrong time. As I bent down, Sam arched and twisted. I wasn't ready for it. My hand was already pointed at the floor when I lost my center of gravity. Of course, Sam was my main priority. I pulled him close, expecting my free hand to catch the bed. Instead, the full weight of my body landed on the first bit of me that touched the floor. My thumb. It bent backward. I heard and felt something - tearing, breaking, or stretching, I wasn't sure. But the electric shock went up my arm. I immediately knew it was bad.
I recovered my balance as the rest of my hand reached the floor. Elisa thought I had dropped Sam. I quelled her concerns and told her that I had hurt my thumb. In a mix of blinding pain and drowsiness, I got Sam wrapped into a poor man's burrito, and he was off to dream land. I felt my thumb, or rather the base of it. No swelling. Just pain. After the Tylenol, I drifted off into an uneasy sleep. I found it ironic that I had gotten injured while jumping in for Elisa because she was dizzy. Apparently, I didn't need to be sick or dizzy to be clumsy.
Again, I wish this could be the end of the story, but that would be robbing you of my favorite part. My own brush with the medical profession, and one I'm still trying to wrap my head around. I woke up the next morning, now convinced that the damage was worse than "it's a little sore". Don't believe me? I could barely wash my hair (my left hand feels a little weird when I try to make it my dominant hand....oh, I didn't mention that it was my right hand that was injured? Of course it was!). Elisa had to button my shirt. I felt like a Kindergartener trying to tie my shoes. Still, I went into work, still in denial. It took three co-workers telling me to get my swollen hand checked out before I relented. On my lunch break, I headed to the fast food of medicine. The Urgent Care. I wasn't about to admit this was serious, and I needed something that would only take a lunch break. Yep, I'm a guy. Welcome to Elisa's world. She now has 4 of them in the house.
I entered the Urgent Care and was checked in. 30 minutes later, my Doctor walked in. At least, I think he was a doctor. He looked like he was Doogie Howser's younger cousin. I was immediately worried. I explained what happened and he started moving my thumb around like a video game joystick. He'd play around with my injured hand, and then play with the healthy one. And provided a confident diagnosis that it wasn't torn, only sprained. To be sure, he wanted to do an x-ray to ensure we didn't have a break. So I got shuttled into that room and then headed back for another 20 minute wait. Oh, and did I mention that I was the only patient in the place? Yeah, they were "efficient".
I knew I was in trouble when the doctor entered with a quizzical look on his face. The x-ray didn't show a break, he said. And then, I kid you not, the following conversation actually took place.
Doogie: So while you were getting x-rays, I looked up some literature on this sort of thing. And I think I need to look at it again.
Brad: OK.
Doogie: (while playing joysticks again, over and over). I don't think it's torn. It would cause you more pain.
Brad: Well, maybe it just hurts all the time and I can't tell the difference. All I know is that it doesn't hurt in a "Oh dear God, stop moving it around" kind of way.
Doogie: Hmm. (back to joysticks)
...
...
...
Doogie: I really don't think it's torn, because from what I read, it would really bend backward and you'd be in a lot of pain.
Brad: OK.
Doogie: I think we should take a conservative approach. I think it's just a sprain. The problem is that I don't have a lot of experience in things like this. They see complete tears alot with skiers because they fall and hit their thumbs on the snow, but the descriptions I read said the difference in movement is 20-30 degrees. And...(while moving my thumbs)...I just can't tell.
Brad: ...
Doogie: So since I don't have a lot of experience here, let's get you to a hand specialist. That way, they can really look at it and let you know if it's torn.
Brad: OK. *sigh
Doogie: Oh, and hey. Can you do me a favor? After you've seen the specialist, if they tell you that it is torn, will you call me and tell me? Because that will help me really be able to know what to look for if I ever have another patient come in.
Brad: Uhh...
Doogie: That would be so helpful to me. Thanks! Now let's get you a splint!
...
...
...
Yeah, that really happened.
Wednesday, November 20, 2013
Tuesday, November 12, 2013
Saving Sam (Chapter 3.11): Piling on and spreading out
Alright, I admit it. The thought has crossed my mind. Every hour. Of every day. Since last Thursday. The more I would step away from last week's events, the more I allowed my mind to go there. It's actually pretty impressive that my sheer willpower had kept me from considering life after Sam's medical conditions had disappeared. No, I'd fallen into the trap of always considering the other side of the equation. What if he didn't get better? What if they couldn't operate? And what if his condition worsened to the point that his life was in danger, yet again? Every hour of every day, I'd worry about how things might not work out. But Dr. Brockmeyer's prognosis and path towards embolization pushed the first domino over. And not only did I start wondering if the haze would end and we'd emerge on the other side. I started to believe that it would happen very soon. After all, why wouldn't they jump right in if Brockmeyer was so convinced of the path forward?
Every night since last Thursday, once Lukas, Miles, Sam, and Elisa were asleep and the dogs were in their crates, I'd lay down and close my eyes. I'd listen to sheer silence, punctured by the occasional breath, groan, or squeal of a sleeping Sam. And my mind would wander to the future. If they could start working on Sam's condition now, how quickly could he heal? Suddenly, I pictured a Thanksgiving Day where we could go to my parents and simple let Sam play on the floor. No oxygen tank trailing behind us as we moved from room to room. It advanced to Lukas' 7th birthday party. Maybe, if Lukas decided to go to a pool again, Sam could take his first dip into the pool. I wouldn't be worried about his breathing anymore, because he'd be healed (if not well on his way to being so). Christmas Eve wouldn't include a rush before bed to get Sam his third dose of Sildenafil. Christmas morning wouldn't be a dreary experience because Sam's pulse oximeter had beeped on and off throughout the night. And perhaps, if we were lucky, Elisa and I could celebrate a New Year's Eve as...dare I say...adults. It was all laid out before me. And every night, I'd let my mind wander for awhile about what could be. I should have known better.
Dr. Brockmeyer's Thursday appointment had left us with an overwhelming sense of worry. Not of the pending fix to his fistula (and the cause of all of this trouble to begin with!), but because the MRI and the invasive intubation was still causing a gurgling, crying Sam to labor in his breathing. After declining Dr. Doom's suggestion that we could "try admitting him to the hospital", we headed home, hopeful that another couple days would cure Sam's struggles. Luckily, it seemed that our patience was paying off. Friday was better than Thursday, and Saturday was better than Friday. Slowly, but surely, Sam seemed to return to his eating schedule and his breathing got a little easier. Mind you, his breathing is never regular. He retracts (pulls in, just under his ribcage) with every breath that he takes), but it didn't seem to be as forced. As an added benefit, he didn't seem to be open rejecting medicine anymore. Sure, he'd arch and complain, but we seemed to be able to get him his Sildenafil (and we were trying out Zantac) without too much fuss.
On Sunday, however, I couldn't help but notice that the gurgling, while more subtle than after the intubation, was still hanging around. I noticed it most when we would give Sam medicine. Nothing in my life has made me want to clear my throat more than having to sit and listen to Sam's gurgling breath. I didn't believe (well, I was hopeful) that the gurgling was only in his throat and wasn't signifying a greater problem within his lungs. But it was there. I comforted myself with the reality that we had another appointment with Dr. Pete on Tuesday - it was hard to believe that Sam was ready for his 2-month well baby visit. I was also comforted by the fact that Sam's saturations had returned to excellent form. No beeping during the nights (although he was still doing a great job keeping me up), and we were seeing consistent saturations in the 98-99-100 zone. I was more pleased to find Sam cuddled next to Elisa on Tuesday morning, his cannula having been accidentally removed from his nose. At first, I panicked, but then realized that beeping hadn't pierced the quiet. Instead, Sam was hanging at saturations of 93-94-95. Not bad, little man. So we headed into see Dr. Pete, hoping for further comfort about Sam's gurgle but also confident that he was otherwise holding his own.
As we drove to the appointment, Elisa and I also talked about the virtual silence thus far from Dr. Brockmeyer. His plan on Thursday was to consult with Dr. Tosky on Friday and then to let us know if we'd be progressing forward now with embolization or would push on the brakes until January. Silence...I promised Elisa that if we hadn't heard by Wednesday, I'd call and start my annoying approach to get answers. I hadn't used it since St. Mark's. The lion could roar if needed. As we talked, I could tell that Elisa was in the same boat I was...allowing herself to picture a world where Sam was going to get fixed in shorter order than we had originally expected. I wondered if she pictured the holidays in the same frame of mind that I had.
Dr. Pete was, as always, wonderful. I'm starting to get very good at diagnosing doctors. After all, we'd had Elisa's OBGYN (just wait for Sam's birth story) + 2 others. In Sam's first two years of life, we'd also lived through 4 St. Mark's Neonatologists, Dr. Doom, 5-6 doctors in CICU, Dr. Pete, Dr. Brockmeyer and his gaggle of Doogie Howsers, plus a couple anesthesiologists on the side. Yes, they're all qualified, but not all doctors are created equal. Dr. Day is a bull in an emotional china shop. Dr. Brockmeyer is smart, focused, and quick to get in and out. Dr. Pete is like an old friend who happens to be a Pediatrician. I'm always amazed at the time he takes. Every appointment, we progress through our questions until both Elisa and I say "I don't think I have any more questions". He doesn't dismiss. He listens. And best of all, he cares about his patients. He encourages the kids running up and hugging him. He makes them laugh, tickles them, and strips away any sense of fear at being at a Doctor's office. Today was no different. He was sitting at the counter (on the phone) when we arrived and he heard Sam's recent cough. By the time he arrived, he jumped into discuss the cough and what might be going on.
Dr. Pete believes that Sam has a virus. It shouldn't be surprising, as Miles has been a cesspool of cooties since Sam was born. Literally, he seems to cycle through colds like someone would clothes. Every week, he starts with a runny nose, moves onto the sniffles, and then coughs like he means it. Rinse. Repeat. And Dr. Pete believes that Sam was probably starting to get it right before the intubation. The procedure is rough on kids...when we told him Sam had been under for about 2 hours, he stated that for a child, that is a long time and a decent strain. Include the fact that Sam is little and frail, and you can imagine that he's being put through the ringer. Dr. Pete listened to Sam's lungs and was happy to report that the gurgle wasn't coming from there. No, it was in his throat and was similar to what Miles had been battling. It's funny. When you have a sick kid (and I'm not talking colds), you always seem to jump to the worst conclusion. Now that Dr. Pete said it out loud, I was surprised that we hadn't been sure that he was battling just a virus or cold.
Through the rest of the appointment, we just got good news. Sure, it's early but Sam is developmentally on the path. His head circumference is holding steady (64th last week, 66th this week). Sam's a long kid...maybe he'll be tall like his Daddy. He ranks in the 85th percentile there, and comes in at a solid 56th percentile on weight. This was the first time that we weighed him without clothes (and with a fresh diaper), and he tipped the scales at 11 lb. 15 oz. Sure, it wasn't quite where he was last week (12 lb. 4 oz.), but when you take away the clothes, the diaper, and realize that Sam hadn't eaten for 2 days, I think I'm okay with his progress. Sam smiled a couple times for Dr. Pete (yeah, he seems to smile a lot for everyone except his parents...he has some teenager in him already!). I asked, point blank "how does Sam look?" Dr. Pete said he was perfect and beautiful. No developmental (physical or mental) concerns. Before the shots ensued (the joys of the 2-month appointment, eh?), we talked about Sam starting Synagis (the RSV drug) and the obscene cost. He was disappointed but unsurprised by our lofty out of pocket expense of $693 per shot. His child had needed these a few years ago and the out of pocket at that point was $1,600. Nice to know they're making progress. Maybe by 2020, a parent can get the medicine for a cool $300 a shot.
So Sam got his shots, Elisa fed him, and we hung around for 15 minutes to make sure that there was no reaction to the RSV drug. And then it was time to go. We grabbed some organic suckers (hey, Mom and Dad need one too these days!) and headed out to the car. It was 4:41pm. Elisa was pulling out of the parking lot and I noticed that I had a voicemail on my phone. I am keenly aware of the caller ID number for Primary Children's Hospital. When you see 801-662-1000, you know who it is from. I listened immediately, hoping to hear Dr. Brockmeyer's voice and the words "we're starting this now." Instead, I got a scheduler.
She was from Neurology and wanted to schedule a MRI/MRA for Sam in January. Ah. What? Hold on, let's back up here. First, I thought we were done with MRIs. Didn't Dr. Brockmeyer say that we wanted to avoid the extra wear and tear on Sam? Wouldn't the next event be an angiogram and attempt to get him fixed? And second, January? When did this get decided and couldn't we have at least been prepared by that promised call from Dr. Brockmeyer? The lion started to purr, so I called and left a message for Dr. Brockmeyer's nurse. I wanted to know how the plan had changed so dramatically. When I hung up, Elisa suggested that I call the scheduler. When I reached her, I inquired as to why this was getting scheduled. As I dialed, those horrible voices in my head (the ones that pronounce doom and despair) started speaking - is Tosky off the table? Are they now having to do brain surgery? Is there a chance we're back to considering this as an inoperable fistula?
The scheduler didn't have much information, but offered to read the email she had received (requesting the scheduling of the MRI). I didn't get much, but I did hear that they were trying to arrange a meet and greet between Brockmeyer, us, Sam, and Dr. Tosky. The MRI had come later. I hung up, still a bit peeved, only to see another voicemail and an incoming call. Dr. Brockmeyer's nurse had returned my voicemail, and was slightly more helpful than the scheduler. Again, she couldn't speak for Dr. Brockmeyer (hey, why don't you just call me like you promised!) but she did have a more clear picture. The plan was indeed to meet with Brockmeyer and with Tosky. That's a positive. Embolization still seems to be the plan, and it seems to make sense that we'd get the crew together to talk about how to tackle his fistula. The MRI, however, seemed to be an afterthought. The nurse said "Dr. Brockmeyer then said in passing "why don't we get another MRI while we're at it so we have the latest and greatest picture"." I asked her to please follow up with the good doctor and ask about his previous assertion that we avoid wear and tear. If he'd forgotten, I'd like to remind him. If he'd changed his mind (or consultation with Tosky mandated it), I'd like to know that as well.
Elisa and I drove home in silence, though, as the true news of all that we had heard began to sink in. There wouldn't be a November fixing of Sam. It was now guaranteed that Sam's journey with this fistula and his continued pulmonary hypertension would reach 4 months. And I felt guilty and upset. I was angry at myself for my late night mind wandering. Against my better judgment, I had allowed pictures of a normal Thanksgiving, December, Christmas, and New Year's to float through my mind. Now, I'm coming to grips with the other side of the coin. The one my mind had been more comfortable with before Brockmeyer had invited in different thoughts. This year, we'll spend Thanksgiving Day at my parents, stepping on and over an oxygen tube that is hooked to a tank that never leaves our side. If Lukas decides to have a pool party for his 7th birthday, one of us will be on the sidelines, watching but not participating as Sam's breathing wouldn't allow the extra stress. Christmas Eve will include a rush before bed to get him his third dose of Sildenafil. Christmas morning will have a tinge of dreariness because Sam's pulse oximeter has a realistic chance of beeping through the night. And Elisa and I will undoubtedly be staying in as 2013 becomes 2014, wondering what the next year holds for our sanity and Sam's continuing story.
Over the next two months (until Sam's scheduled MRI on January 15th), these thoughts will cross my mind. Every hour. Of every day. Since this Tuesday. I should have known better.
Thursday, November 07, 2013
Saving Sam (Chapter 3.10): Intubate, extubate, throw up all the food you ate
I was bleary eyed. And worried. The beeping was more distant, but it was distinct. The oxygen saturation monitor was blaring it's ugly message one more time. I was quite sure that only 15-20 minutes had passed since I'd been trudging into our master bathroom/walk-in closet to check on Sam. Sure, we'd had some bad nights but this had gone from problematic to very scary. When I entered the bathroom, between each annoying beep, I could hear Sam's labored breathing. Each breath was tinged with a slight gurgle. And Sam was clearly not happy - wanting to cry, but not necessarily desiring the pain in his throat that would go with it, he was grunting and holding his breath. I reached down and picked Sam up, holding his right cheek next to my left. I started to sing. It's funny that I have chosen the same random song to belt out whenever my infant children have needed soothing. It wasn't intentional, and it surely wasn't the first song on my playlist, but for Sam, like Lukas and Miles before him, it seemed to be helping. Again, I chose "Everything's Alright" from the musical Jesus Christ Superstar. Maybe it's just easy to pick up and put down. Maybe I thought the words ("Everything's alright, yes, everything's fine") would somehow speak to my upset children.
On this night, I sang that very song as Sam started to collect himself. The oxygen saturation meter was still beeping in between my words, but it was slowly creeping towards the magic number 88 - the percentage that would stop the beeping and give me a chance to breathe a sigh of relief. 84, 85, 86. Sam was still struggling to catch his breath. 87. Always hanging out on 87 like a taunting bully in the corner. Sam coughed, trying to relief himself from the pain and saliva clearly built up in the last few minutes. 88. Finally 88. The beeping stopped, yet I could still hear it in my ears. Sam slowly calmed, although the gurgling didn't dissipate. Before I knew it, his saturations were back up to 94-95-96. He was finally willing to take his bunk, and I laid him back down. I walked out of the bathroom and closed the door. As I walked back to my bed, I could just make out the labored breathing. I climbed in, closed my eyes, and wondered how many minutes would pass before the beeping would once again pierce the quiet of our bedroom. And I wondered...how could this be the hard part? That was supposed to end by mid-afternoon.
It's been an eventful two days in Sam's story, to say the least. Yes, the next milestone in our adventure had arrived, and this one-two punch would offer some interesting challenged and experiences. On Wednesday, Sam was scheduled to have his second MRI - an exploratory view of his fistula, and Dr. Brockmeyer's chance to "compare apples to apples" to see if the fistula was changing. This wasn't a simple procedure. Because you need to be still for an extended period of time (and the machine isn't quiet), they would have to intubate and sedate Sam through general anesthesia. We would take him home by mid afternoon and then were scheduled to return to PCMC on Thursday morning to meet with Dr. Brockmeyer and to see if we had a plan. Both events happened, with both expected and surprising results. Some of which, we're still battling with tonight.
Tuesday afternoon, we decided that the kindest thing (to both the kids and to my Mom, who would be watching them) was to give the boys an overnight. A night away at Grandma and Grandpa's house would allow the boys to get their full sleep, my Mom the courtesy to not have to be at our house at 6:15am, and us the peace of mind that we could arrive at PCMC by 7:00am without a mad rush in the morning. We took advantage of the quiet house to get some dinner, spend some quality time with Sam, and get to bed a little early. We had to adjust our regular schedule because Sam's MRI was set for 9:00AM and he couldn't have anything to eat or drink after 5:00AM. So we got up at 2:30 to give Sam his first feeding, and then raised him from sleep at 4:30 to deliver his next dose of Sildenafil and his last meal before the scheduled fast. We laid back down at 5:00am. By my calculations, we could get another 45 minutes of sleep and then still be on time. I fell asleep. Elisa, true to form, pulled herself out of bed and went to exercise. I jolted awake at 6:05, realizing that we only had 25 minutes before we had to be out the door. Forget the shower - I was simply grateful that Elisa entered the bedroom with a hot cup of coffee. My nose reacted immediately. My eyes still hadn't gotten the message that their natural state during the day should be in the open position. Eventually, we ran through the house in the mad rush that we were hoping to avoid, wolfed down some quick breakfast, and were in the car only 10 minutes late. 20 minutes later, we were at Primary Children's, heading to the second floor and same day surgery. No, Sam wasn't having surgery, but the general anesthesia was one in the same in getting checked out and ready to be put under.
After checking in, I had another PCMC moment of guilt. I felt a bit angry, driving up to PCMC on Wednesday. Sometimes, even weeks after Sam's arrival and subsequent medical difficulties, I find myself angry. Why us? Why Sam? What would life be like right now if he had been fine? Would I be planning a family trip? Those moments carried me into the waiting room. And then I looked around. We were surrounded by sick children, checking in for actual surgical procedures. There was a little girl with a cleft lip. Another girl, whose mother was telling another mom that she needed some cysts removed. One mother was clearly overwhelmed with twins in her hands, asking the nurse to help her carry some bags. But it was a little boy in a wagon that made me feel most guilty for being mad about Sam's condition. I'm not sure of his syndrome, but his mom was telling another parent about the trials he had been through. He had been dealt with such severe cranial stenosis that they had done brain surgery. Today, they were removing the pins that had held the skull pieces into place. He had a breathing apparatus because he had been born with constricted airways. I watched as his Dad cleaned out the tubes so that the gurgling sound would fade. The boy's hands showed only 4 fingers...his middle and ring fingers were one and the same, even though "structurally, he has all five fingers...they'll fix that down the road if he wants them to." Yes, this was heartbreaking but my guilt came from the smiles that emanated from this little fighter of a boy. He liked playing with his Dad. Loved being in the wagon. Loved his Mom trying to sort out the uncontrolled curls while they waited. Yes, Sam's condition is serious and his heart is under a true attack. His future isn't written. But we have been told that Sam has an end in sight. If everything goes to plan, he could leave this part of his life as a collection of chapters, not his whole book. This boy would have issues for his entire life...and he was smiling. My guilt overwhelmed me. I had to look away.
Before we knew it, we were taken back by a nurse. Sam got checked out and we were prepped for our day. We would be greeted by Sam's Anesthesiologist and would head down to Imaging. There, Sam would be intubated (a tube inserted into his throat to help him breath) and general anesthesia would be administered. Sure enough, we soon met our doctor and headed downstairs. We informed him that Sam had gone through this routine once before. I sensed that this doctor had a little "Doom" in him, as he said "if we can extubate him, he'll recover and you should be able to go home by mid-afternoon. If not, we'll leave the tube in, and we'll send him to ICU to let them sort it out!" Ummm....thanks? And then we were greeted with the hardest part of the day so far. You'd think that we'd know Sam would be fine, but having to give him a kiss and leave him to get general anesthesia is not kind. It hurt my heart to walk away, because in those moments, you don't think "hey, this is a piece of cake!" You worry that something bad is going to happen. For a split second, I wondered what I'd be like when kissing him goodbye for brain surgery. I let that thought slip away as quickly as it had appeared. I'm not quite ready for that one.
We were told that the procedure should be about an hour, so Elisa went off to pump (no breastfeeding, obviously) and I got our second cups of coffee. Yep, the eyelids were still failing me. I needed espresso, stat! With those two pieces out of the way, Elisa settled into a quiet waiting room and pulled out our work computers. When you're waiting for your child to get out of a medical procedure, sometimes a release like work is a welcome thing. It was today, although I had to feel bad and chuckle at Elisa. One of the detriments to being short is that very few chairs are designed for you. So here I was, Daddy Long Legs, with my laptop comfortably sitting on my....lap. Elisa, on the other hand, was strategically holding her laptop. The angle her legs took when her feet were flat on the floor looked like 30 degrees. Her laptop was slip-sliding away. She tried to put it on the diaper bag (too tall). My computer bag (too heavy). Soon, Goldilocks...errr...Elisa settled for the laptop going on a side table and rearranging her chair to make a faux desk. Whatever it takes, right? About 90 minutes after we left little Sam, a nurse came out to get him. We got our first blast of good news when she said he did great. We got our second when we were escorted back to see a sleeping Sam getting treated with a little funnel of oxygen. Elisa took him in her arms and I started to think that things were looking up. He had battled through the anesthesia. He had been extubated. Sure, he sounded a bit hoarse and there was a slight gurgle in his throat, but this was good, right?
And then Elisa tried to feed him. And he screamed Bloody Murder. She's try to feed him, he'd cry, we'd spend 10 minutes calming him down, and then she'd try to feed him. He wasn't having any of it. I remembered when we did the first MRI that Sam had been given Tylenol - namely for any throat discomfort and headache. We asked if he would get it, and the nurse stared at me as if I was a moon rock. You know, Tylenol? Heard of it? She scurried off to get some and returned with some of the purple stuff. At first, she made it sound like we would have to get Sam to eat before he could be released. Suddenly, it felt like the nurse was in 5th gear. He's not eating? No problem, he's awake and that's enough! Hey, can you calm him down long enough for me to yank out his IV? Hold on one second, I just have to take this phone call from my husband! Oh, his IV is bleeding all over your husband's shirt? I'll take care of that...and make sure you treat that stain when you get home! It felt like we were pushed out the door. All I knew is that Sam seemed to be breathing a bit harder, had some gurgling that I thought was just some excess saliva, and that he would be fine. And for the most part, the rest of the day followed that logic. He ate a little. Next time, he ate a bit more. By 6:00pm, he'd had a good feeding and got his next syringe of Sildenafil. We went to bed, confident that a good night's sleep would make him all better. And when he woke at 2:30 (and had his best feeding), I was...dare I say...hopeful! And then it started.
Sam's oxygen saturations would dip when he'd cry. And when I say dip, I'm not talking about going from 98 to 92. His lowest reading was 77 (at least that I saw). Elisa made the executive decision to move Sam's bassinet into our master bathroom/walk-in closet to let us sleep. Sadly, all it did was transfer the beeping from one room to another. Sometime after 3:00, we tried to give him Tylenol but he ended up throwing it up (all over me...the joy of rapid warmth, followed by stinky cold. Brrr!). The congestion in his throat worsened. He wouldn't get comfortable. And for the rest of the night, we fell into a routine. 15-20 minutes of groaning noises emanating from the bathroom, followed by a crying fit, beeping monitor, and panicked parents. Elisa and I gave up the dream of sleep at about 5:30AM. It wasn't happening and we were really starting to get concerned. I thought the MRI and the general anesthesia would be the worst of it. I was very wrong. Sam had a very rough night, which meant Mom and Dad were even more exhausted as we headed into Sam's big appointment. I had hoped we would head in with only the worries of Sam's head. I now was worried about the head, his throat, his heart, his breathing, and his terribly crying and dropping saturations. It's never easy, is it?
Still, we got up and continued to watch Sam struggle with his saturations. We got to the point that I turned off the monitor, realizing that I was only finding worry (no comfort) in the incessant beeping. My Mom showed up to shuttle the kids off to school and Elisa and I took little Sam back to PCMC for the second time in two days. While waiting to get checked in for Dr. Brockmeyer, Sam had another crying fit. By the time we were in the waiting room, he had gone back to sleep but sounded as though he REALLY needed to clear his throat, but couldn't. And then, Dr. Brockmeyer entered the room, slapping us back to the reality of his head and the path forward.
I'll start off by saying that this entire section isn't bad news...on the contrary, I feel like we have more of a plan than we have before. But we started our talk with Brockmeyer with the knowledge that Sam's fistula has grown. Whereas the Cardio appointment was a big old "more of the same", Dr. Brockmeyer showed us that while the increase was small (and could be partially attributed to Sam's growth), the MRI clearly showed an increase and simply reminded us that this was something that would need to be fixed. If my biggest fear on Day One was that Sam would struggle coming out of the anesthesia, Day Two's worry was that we would be told that Sam's fistula was inoperable. Dr. Brockmeyer didn't insinuate it at all. In fact, he now had a plan that he was ready to enact.
I have found that many doctors have a sort of God complex. I actually understand why - they learn some of the most amazing skills that can turn someone's situation from death to a long life. If Brockmeyer had this complex, I wouldn't have been surprised to hear him plan out open brain surgery for little Sam. But this isn't Dr. Brockmeyer. His plan was more straightforward, plodding, and safe for Sam. And I'm grateful. So here's the plan.
Soon, we will add a new doctor to Sam's story. Dr. Brockmeyer is going to start consulting with Dr. Towskey, an Endovascular Surgeon at University of Utah Hospital. Our first course of action will be a review between the two doctors and a formulation of a plan to attempt to stop the fistula through embolization. This less invasive process involves a catheter in an artery in the groin, and a small path up through the carotid artery. Here, they will do an angiogram (releasing dye into the bloodstream and taking a series of pictures so they know the path of the blood and where they need to tackle the fistula). At first, I thought this meant two separate procedures and recoveries. I was pleasantly surprised to find out that the angiogram and embolization (probably coiling the feeders to the fistula closed) would be a 1-2 punch of a procedure. I was more pleasantly surprised to find out that the recovery time in hospital for embolization is a single day. Yes, I'll take that over 1-2 weeks!
Dr. Brockmeyer is hopeful that the embolization can take care of the fistula completely. But, he painted three scenarios that could result:
On this night, I sang that very song as Sam started to collect himself. The oxygen saturation meter was still beeping in between my words, but it was slowly creeping towards the magic number 88 - the percentage that would stop the beeping and give me a chance to breathe a sigh of relief. 84, 85, 86. Sam was still struggling to catch his breath. 87. Always hanging out on 87 like a taunting bully in the corner. Sam coughed, trying to relief himself from the pain and saliva clearly built up in the last few minutes. 88. Finally 88. The beeping stopped, yet I could still hear it in my ears. Sam slowly calmed, although the gurgling didn't dissipate. Before I knew it, his saturations were back up to 94-95-96. He was finally willing to take his bunk, and I laid him back down. I walked out of the bathroom and closed the door. As I walked back to my bed, I could just make out the labored breathing. I climbed in, closed my eyes, and wondered how many minutes would pass before the beeping would once again pierce the quiet of our bedroom. And I wondered...how could this be the hard part? That was supposed to end by mid-afternoon.
It's been an eventful two days in Sam's story, to say the least. Yes, the next milestone in our adventure had arrived, and this one-two punch would offer some interesting challenged and experiences. On Wednesday, Sam was scheduled to have his second MRI - an exploratory view of his fistula, and Dr. Brockmeyer's chance to "compare apples to apples" to see if the fistula was changing. This wasn't a simple procedure. Because you need to be still for an extended period of time (and the machine isn't quiet), they would have to intubate and sedate Sam through general anesthesia. We would take him home by mid afternoon and then were scheduled to return to PCMC on Thursday morning to meet with Dr. Brockmeyer and to see if we had a plan. Both events happened, with both expected and surprising results. Some of which, we're still battling with tonight.
Tuesday afternoon, we decided that the kindest thing (to both the kids and to my Mom, who would be watching them) was to give the boys an overnight. A night away at Grandma and Grandpa's house would allow the boys to get their full sleep, my Mom the courtesy to not have to be at our house at 6:15am, and us the peace of mind that we could arrive at PCMC by 7:00am without a mad rush in the morning. We took advantage of the quiet house to get some dinner, spend some quality time with Sam, and get to bed a little early. We had to adjust our regular schedule because Sam's MRI was set for 9:00AM and he couldn't have anything to eat or drink after 5:00AM. So we got up at 2:30 to give Sam his first feeding, and then raised him from sleep at 4:30 to deliver his next dose of Sildenafil and his last meal before the scheduled fast. We laid back down at 5:00am. By my calculations, we could get another 45 minutes of sleep and then still be on time. I fell asleep. Elisa, true to form, pulled herself out of bed and went to exercise. I jolted awake at 6:05, realizing that we only had 25 minutes before we had to be out the door. Forget the shower - I was simply grateful that Elisa entered the bedroom with a hot cup of coffee. My nose reacted immediately. My eyes still hadn't gotten the message that their natural state during the day should be in the open position. Eventually, we ran through the house in the mad rush that we were hoping to avoid, wolfed down some quick breakfast, and were in the car only 10 minutes late. 20 minutes later, we were at Primary Children's, heading to the second floor and same day surgery. No, Sam wasn't having surgery, but the general anesthesia was one in the same in getting checked out and ready to be put under.
After checking in, I had another PCMC moment of guilt. I felt a bit angry, driving up to PCMC on Wednesday. Sometimes, even weeks after Sam's arrival and subsequent medical difficulties, I find myself angry. Why us? Why Sam? What would life be like right now if he had been fine? Would I be planning a family trip? Those moments carried me into the waiting room. And then I looked around. We were surrounded by sick children, checking in for actual surgical procedures. There was a little girl with a cleft lip. Another girl, whose mother was telling another mom that she needed some cysts removed. One mother was clearly overwhelmed with twins in her hands, asking the nurse to help her carry some bags. But it was a little boy in a wagon that made me feel most guilty for being mad about Sam's condition. I'm not sure of his syndrome, but his mom was telling another parent about the trials he had been through. He had been dealt with such severe cranial stenosis that they had done brain surgery. Today, they were removing the pins that had held the skull pieces into place. He had a breathing apparatus because he had been born with constricted airways. I watched as his Dad cleaned out the tubes so that the gurgling sound would fade. The boy's hands showed only 4 fingers...his middle and ring fingers were one and the same, even though "structurally, he has all five fingers...they'll fix that down the road if he wants them to." Yes, this was heartbreaking but my guilt came from the smiles that emanated from this little fighter of a boy. He liked playing with his Dad. Loved being in the wagon. Loved his Mom trying to sort out the uncontrolled curls while they waited. Yes, Sam's condition is serious and his heart is under a true attack. His future isn't written. But we have been told that Sam has an end in sight. If everything goes to plan, he could leave this part of his life as a collection of chapters, not his whole book. This boy would have issues for his entire life...and he was smiling. My guilt overwhelmed me. I had to look away.
Before we knew it, we were taken back by a nurse. Sam got checked out and we were prepped for our day. We would be greeted by Sam's Anesthesiologist and would head down to Imaging. There, Sam would be intubated (a tube inserted into his throat to help him breath) and general anesthesia would be administered. Sure enough, we soon met our doctor and headed downstairs. We informed him that Sam had gone through this routine once before. I sensed that this doctor had a little "Doom" in him, as he said "if we can extubate him, he'll recover and you should be able to go home by mid-afternoon. If not, we'll leave the tube in, and we'll send him to ICU to let them sort it out!" Ummm....thanks? And then we were greeted with the hardest part of the day so far. You'd think that we'd know Sam would be fine, but having to give him a kiss and leave him to get general anesthesia is not kind. It hurt my heart to walk away, because in those moments, you don't think "hey, this is a piece of cake!" You worry that something bad is going to happen. For a split second, I wondered what I'd be like when kissing him goodbye for brain surgery. I let that thought slip away as quickly as it had appeared. I'm not quite ready for that one.
We were told that the procedure should be about an hour, so Elisa went off to pump (no breastfeeding, obviously) and I got our second cups of coffee. Yep, the eyelids were still failing me. I needed espresso, stat! With those two pieces out of the way, Elisa settled into a quiet waiting room and pulled out our work computers. When you're waiting for your child to get out of a medical procedure, sometimes a release like work is a welcome thing. It was today, although I had to feel bad and chuckle at Elisa. One of the detriments to being short is that very few chairs are designed for you. So here I was, Daddy Long Legs, with my laptop comfortably sitting on my....lap. Elisa, on the other hand, was strategically holding her laptop. The angle her legs took when her feet were flat on the floor looked like 30 degrees. Her laptop was slip-sliding away. She tried to put it on the diaper bag (too tall). My computer bag (too heavy). Soon, Goldilocks...errr...Elisa settled for the laptop going on a side table and rearranging her chair to make a faux desk. Whatever it takes, right? About 90 minutes after we left little Sam, a nurse came out to get him. We got our first blast of good news when she said he did great. We got our second when we were escorted back to see a sleeping Sam getting treated with a little funnel of oxygen. Elisa took him in her arms and I started to think that things were looking up. He had battled through the anesthesia. He had been extubated. Sure, he sounded a bit hoarse and there was a slight gurgle in his throat, but this was good, right?
And then Elisa tried to feed him. And he screamed Bloody Murder. She's try to feed him, he'd cry, we'd spend 10 minutes calming him down, and then she'd try to feed him. He wasn't having any of it. I remembered when we did the first MRI that Sam had been given Tylenol - namely for any throat discomfort and headache. We asked if he would get it, and the nurse stared at me as if I was a moon rock. You know, Tylenol? Heard of it? She scurried off to get some and returned with some of the purple stuff. At first, she made it sound like we would have to get Sam to eat before he could be released. Suddenly, it felt like the nurse was in 5th gear. He's not eating? No problem, he's awake and that's enough! Hey, can you calm him down long enough for me to yank out his IV? Hold on one second, I just have to take this phone call from my husband! Oh, his IV is bleeding all over your husband's shirt? I'll take care of that...and make sure you treat that stain when you get home! It felt like we were pushed out the door. All I knew is that Sam seemed to be breathing a bit harder, had some gurgling that I thought was just some excess saliva, and that he would be fine. And for the most part, the rest of the day followed that logic. He ate a little. Next time, he ate a bit more. By 6:00pm, he'd had a good feeding and got his next syringe of Sildenafil. We went to bed, confident that a good night's sleep would make him all better. And when he woke at 2:30 (and had his best feeding), I was...dare I say...hopeful! And then it started.
Sam's oxygen saturations would dip when he'd cry. And when I say dip, I'm not talking about going from 98 to 92. His lowest reading was 77 (at least that I saw). Elisa made the executive decision to move Sam's bassinet into our master bathroom/walk-in closet to let us sleep. Sadly, all it did was transfer the beeping from one room to another. Sometime after 3:00, we tried to give him Tylenol but he ended up throwing it up (all over me...the joy of rapid warmth, followed by stinky cold. Brrr!). The congestion in his throat worsened. He wouldn't get comfortable. And for the rest of the night, we fell into a routine. 15-20 minutes of groaning noises emanating from the bathroom, followed by a crying fit, beeping monitor, and panicked parents. Elisa and I gave up the dream of sleep at about 5:30AM. It wasn't happening and we were really starting to get concerned. I thought the MRI and the general anesthesia would be the worst of it. I was very wrong. Sam had a very rough night, which meant Mom and Dad were even more exhausted as we headed into Sam's big appointment. I had hoped we would head in with only the worries of Sam's head. I now was worried about the head, his throat, his heart, his breathing, and his terribly crying and dropping saturations. It's never easy, is it?
Still, we got up and continued to watch Sam struggle with his saturations. We got to the point that I turned off the monitor, realizing that I was only finding worry (no comfort) in the incessant beeping. My Mom showed up to shuttle the kids off to school and Elisa and I took little Sam back to PCMC for the second time in two days. While waiting to get checked in for Dr. Brockmeyer, Sam had another crying fit. By the time we were in the waiting room, he had gone back to sleep but sounded as though he REALLY needed to clear his throat, but couldn't. And then, Dr. Brockmeyer entered the room, slapping us back to the reality of his head and the path forward.
I'll start off by saying that this entire section isn't bad news...on the contrary, I feel like we have more of a plan than we have before. But we started our talk with Brockmeyer with the knowledge that Sam's fistula has grown. Whereas the Cardio appointment was a big old "more of the same", Dr. Brockmeyer showed us that while the increase was small (and could be partially attributed to Sam's growth), the MRI clearly showed an increase and simply reminded us that this was something that would need to be fixed. If my biggest fear on Day One was that Sam would struggle coming out of the anesthesia, Day Two's worry was that we would be told that Sam's fistula was inoperable. Dr. Brockmeyer didn't insinuate it at all. In fact, he now had a plan that he was ready to enact.
I have found that many doctors have a sort of God complex. I actually understand why - they learn some of the most amazing skills that can turn someone's situation from death to a long life. If Brockmeyer had this complex, I wouldn't have been surprised to hear him plan out open brain surgery for little Sam. But this isn't Dr. Brockmeyer. His plan was more straightforward, plodding, and safe for Sam. And I'm grateful. So here's the plan.
Soon, we will add a new doctor to Sam's story. Dr. Brockmeyer is going to start consulting with Dr. Towskey, an Endovascular Surgeon at University of Utah Hospital. Our first course of action will be a review between the two doctors and a formulation of a plan to attempt to stop the fistula through embolization. This less invasive process involves a catheter in an artery in the groin, and a small path up through the carotid artery. Here, they will do an angiogram (releasing dye into the bloodstream and taking a series of pictures so they know the path of the blood and where they need to tackle the fistula). At first, I thought this meant two separate procedures and recoveries. I was pleasantly surprised to find out that the angiogram and embolization (probably coiling the feeders to the fistula closed) would be a 1-2 punch of a procedure. I was more pleasantly surprised to find out that the recovery time in hospital for embolization is a single day. Yes, I'll take that over 1-2 weeks!
Dr. Brockmeyer is hopeful that the embolization can take care of the fistula completely. But, he painted three scenarios that could result:
- Great - embolization coils off all feeders to the fistula, and the fistula deflates and shrinks. No surgery is required to remove the fistula, blood overload in the heart reduces, and Sam's heart repairs (with pulmonary hypertension hopefully fading into the sunset)
- OK - embolization works, but the Dr. runs out of dye. Apparently, you can only inject so much dye based on the patient's weight. In this scenario, Dr. Towskey would fix some of it, Sam would recover, and we'd repeat the whole thing again in 1-2 more sessions. The end result being the same, if not a bit more drawn out.
- BAD - embolization works partially, but Dr. Towskey determines that he can't get any more of it. He returned to Dr. Brockmeyer and the good Doctor takes over...finishing the eradication of Sam's fistula with open brain surgery
Either way, the plan is the less invasive embolization. I'll take that. In terms of timeframe, Dr. Brockmeyer is planning on consulting with Towskey on Friday. By early next week, we should get a call. The two doctors will consult on how to tackle the fistula, and then talk about when. If the risks are equal, Dr. Brockmeyer believes they could go in and fix it now. If they believe it is safer to wait a bit, we'll target January. Needeless to say, by the time the calendar switches to February 2014, Sam will have had his first (and hopefully last) brain surgery...even if it is only embolization.
I wish I could say that was the end of our day, but Dr. Brockmeyer had to ask about the gurgling. We told him that it started with the extubation and he looked well out of his comfort zone. Knowing he wasn't the heart/lung expert (again, I love a lack of God complex), he advised that we cross the hall and see if Dr. Doom was available for consult. So we did. Sure enough, his Nurse went and chased him down and we found ourselves in a Dr. Doom check up. I must go on record, however, and say that Dr. Doom is growing on me. Don't get me wrong, he'll be Dr. Doom for his horrific proclamation of impending doom on Sammy, but I have been impressed with the level of care he is providing. When we were waiting for Sam to get out of the MRI, Dr. Day stopped by and said hi. He went back and checked on Sam and gave us an update that things were going well. He said good luck to us in the hallway on the way out of Day One. And without an appointment, he took the time to examine Sam and see if the gurgling wasn't more problematic. It turns out that he thinks Sam needs a couple more days to recover, and that his vocal chords and esophagus are clearly raw and in pain, and they need to recover. Swollen vocal chords are probably causing the gurgling but we did end up with a prescription for Zantac, as some of the coughing could be a result of Acid Reflux that isn't resulting in full-on spit up.
So we headed out, but not before Dr. Day could play his one card of Dr. Doom - just to remind us that he's still in there. When we asked if he was okay, Dr. Day said "you can give it a day or two to see if he improves, or we can admit him into the hospital and they can try to make it better...but might not even be able to!" Thanks, Dr. Doom. I think we'll skip the voluntary inpatient hospital visit this time. But thanks for asking.
Sam screamed as we drove away from PCMC and Elisa and I still had pained worry lines etched across our faces. He slowly went to sleep, Elisa dropped me off at work, and I went back into normal. Yet, 15 minutes later, Elisa let me know that Sam wouldn't stop screaming, wouldn't eat, and had violently thrown up a new dose of Tylenol. I decided to work from home for the rest of the day, and arrived to three familiar noises: Sam crying, Sam gurgling, and a beeping monitor. Yep, we weren't out of the woods yet. After we got him calmed down, Elisa headed out to pick up her best friend from the airport (here for a weekend visit) and it was me, Sam, and my work computer. I was proud. I navigated a 30 minute work call, changed Sam 3 times, fixed his monitor so that it wasn't going off with every simple Sam kick or movement, put him to sleep in our baby swing, and got some work done. By the time Elisa arrived home, Sam was calm, ate his Sildenafil, and had a good feeding with Elisa. Yep, I'm the man. Let's ignore the fact that I was desperate for a stiff drink throughout the experience. I was determined to deliver a calmer Sam to my worried wife.
Throughout the rest of the day, we've fallen into a routine. A few hours of calm, a few really good feedings, and then a drop of medicine that makes him vomit all over the place. I'll end today's long story with the thankful words of Dr. Brockmeyer - no more MRIs for Sam. From his mouth, "we need to keep the wear and tear down on this little one". Yes, please. Because the wear and tear of MRI #2 is all over my shirt right now. And it stinks.
Both figuratively and literally.
Sunday, November 03, 2013
Saving Sam (Chapter 3.09): Something old, something new
It's been a few weeks since we had anything as memorable as the 7 day bookend that we've just begun. It's been relatively drama free (well, at least to the point that it was blog or emergency room worthy), and I'm struck at how short and long the time feels as I realized that a month ago, we were sitting in a Primary Children's Hospital room, eager to see if we'd be able to take our little Sam home. But, as Sam's condition and story will not see resolution until (hopefully) they go to work on the fistula in his brain, we will have more bookend weeks like this. It started on Friday, with a check-up with Dr. Pete. It will end sitting in Dr. Brockmeyer's office, hearing about the second MRI results and what the next few months might look like for our little fighter. That's not to say that Sam hasn't kept us on our toes over the last 10 days (well, 10 days between Dr. Doom and Dr. Pete this last Friday). He's found new ways to terrify us...even using our comfort tools against us.
When you have an infant, you make countless lists in your head of silly things that you want to address with your pediatrician. Is he eating too much? Not enough? Sleeping too much? Not enough? Staring too long, not staring long enough, smiling too early, not smiling at all, barely smiling half smiles and do you count them? We join a fraternity when we become parents. It's Alpha Chi Worry. And we catalogue those worries into lists so that we can gain some insight and/or peace of mind when the inevitable trip to the doctor's office next occurs. For us, Sam's condition remains a source of constant questions - is he okay? How long will they wait? How is his heart? Is it holding up? Is it breaking down? In addition to those regular questions (well, for us...), Sam has given us new reasons to worry.
When we brought Sam home almost a month ago, his right hand had suffered trauma at the hands of the last IV. There was a large bump, and you'll remember us wringing our hands over the temperature differences of his two hands. While the temperature difference has become less noticeable, and the bump slowly disappeared, we now find ourselves getting to know every inch of little Sam. And Elisa noticed that Sam's right hand seemed a bit bigger than his left. Add it to the list. When you Google that, you either get unhelpful information that says if that happens, it's always a reversal in hands, or you read about horrible diseases and genetic problems that you wish you hadn't clicked on. We also had experienced a couple of car seat terrors - pulling the little man out and finding two purple feet staring back at us. One time, his feet felt violently hot. Another, very cold. So we couldn't just chalk it up to a temperature issue. That went on the list too. But it was the last item on the list that had us most worried.
Sometimes, our greatest tool and scariest knowledge is through our pulse oximeter. Every night, we hook that little red light to one of his feet and we watch...it's a constant reading of his oxygen saturations and pulse. And, for 3 weeks or so, we only noticed that we got an alarm on oxygen saturation when Sam decided to bear down while crying in his infinite attempts to resemble a grape. But on Tuesday night (last week), Sam's oximeter started showing tremendous drops in his saturation without the grape routine. He'd just fidget around and would go from 98% to 85% in a matter of 15 seconds. The beeping would begin and we'd sit, wondering if it would come back up. We also seemed to see that Sam's peak saturations weren't nearly what they usually saw. Sam liked to hang out in the 97-100 range, but we were getting readings in the 90-94 range. Sure, you might think we're just being overprotective, but it's the benefit and horror of having a tool like this. You seek truth in it - a sign that Sam is okay or a red flag that something's wrong. Sam decided to go through this routine for 3 days - enough fear that I called Dr. Pete in advance and he told us that as long as Sam recovered from the drops, we could make it to his Friday appointment (he was adamant about not going to PCMC when I inquired). So, we added that to this list - the big one. "Are the saturation changes a greater sign of heart failure?"
Friday came and we headed into see Dr. Pete, hopeful that he would give us information that fell into the "peace of mind" category. For the most part, I think we got it. But I also was struck by the feeling of reality - Sam's really sick. He has a serious condition that needs to be fixed before we can start talking about normal and healthy. Because he's not, and when you have a sick kid, you need to get used to scary phrases coming up in conversations - you know, things like "first signs of heart failure", "nothing to worry about at this point", and the like. But before we get to our list of three items, let's start with the fever that's catching the nation. What does Sam weigh this week? It's a sad fact that I spend my time leading up to an appointment doing calculations of 1 ounce gain per day and what we should expect. But when Sam had last seen a doctor (10 days before in Cardiology), he was a healthy 11 lb. 8 oz. By my calculations, he needed to be at 12 lb. 2 oz. to be on track at an ounce a day. So onto the scale he went and we watched the numbers rise. Sam, like the champ that he his, just sat and let the weight drop onto the scale. 10...11...12...finally landing at a healthy 12 lb. 1 oz. Yep, he's still putting on weight. Which is good, because he's starting to resemble a linebacker.
With that worry out of the way, we got down to brass tacks with Dr. Pete. We started with the hands. Dr. Pete did some comparisons, and gave us the scary (but somehow reassuring) "there's nothing to worry about at this point." He did tell us that there are some conditions that result in one half of the body being bigger than the other, but he also was kind enough to make a joke (well, Elisa rolled her eyes...it's nice to know she doesn't only save that for me!) about a teenage boy getting a larger and hairier right hand than left. He did tell us that when you have a sick child, your knowledge of their body becomes an impressively accurate accounting. Our eyes, because we're so focused, can literally distinguish millimeter differences. In the end, he told us that no person is perfectly symmetrical, and while he could see a slight difference in Sam's palm size, he didn't see a difference in Sam's fingers...indicating that it probably isn't a big deal. When I inquired about the possibility of damage and healing from the IV, he said it was possible...especially, since you can still clearly see the affected veins in his hand.
We moved onto the feet. I feared that this would be a sign of problems with Sam's heart. This was an easier one to overcome. Dr. Pete explained that while it can be a sign of poor perfusion (oxygen saturation), it's more likely to be due to stagnant blood. When a child or baby isn't moving their feet around to get the blood flowing, you will see the purple appear in the feet. We had specifically seen the phenomenon when Sam had been in the carseat for awhile. That seemed to be reasonable enough of an explanation, so we dove into the saturations and his problems of the past three days.
Dr. Pete wasn't overly concerned He said that it was very good to see that he had recovered within minutes when the saturation problems had occurred. He also helped us to see that Sam had seemingly returned to normal over the last day. In fact, Dr. Pete made me feel like my "it will be okay, honey!" approach that I usually take (to my detriment) might have been a bit more spot on. When he started having issues 3 days before, I noticed that he seemed to sound a bit hoarse. In the dead of night, I openly wondered if he had a bug. Dr. Pete believed that this was probably the case. He's surrounded by brothers that are constant germ magnets in 1st grade and Preschool. Bugs will hit Sam. Dr. Pete believed that the bug that he might have had probably just made saturation a little more difficult. Okay, whew. But through the rest of our conversation, we did get a slightly worrisome comment. We inquired, almost off the cuff, about a persistent cough that Sam had been dealing with since he had come home from PCMC. While I feared bad news with the feet question, I expected this one to just be a brush off. It wasn't. Dr. Pete let us know that a cough like this could be a clear sign of heart failure. He did calm us by saying that Sam was gaining weight, looked good, and was thriving. But I will tell you - when you hear that and then he coughs (even though you never really worried during the hundreds before), you feel your heart beating a little faster. Since we heard that, every cough feels scary. Everything about Sam's medical condition is scary. Yes, even a cough.
Still, we left Dr. Pete's with our list of questions answered. We went into our weekend, ready to clean up the Halloween decorations that Miles had begged us to put up for Thursday's festivities. It wasn't until tonight...a regular Sunday for most, when people are looking forward (or dreading) the work week ahead. For us, we look at Wednesday and Thursday with trepidation. We started this 7 day period with the old - good old Dr. Pete, answering all of our silly and worrisome questions. We will end it with the new. New results of the true culprit that has caused Sam so many problems in his young life. On Wednesday morning, we head back to PCMC for a 7:00am appointment. There, Sam will get another MRI. General anesthesia. Intubated. And magnetic images of his brain and this troublesome fistula. We'll worry about him being under anesthesia. We'll hate that he'll grunt because his throat will be agitated from being intubated and getting help breathing. But the real worry comes on Thursday, when we have a 9:00am appointment with Dr. Brockmeyer. Has the fistula grown? Are they as confident that they can fix it now than they were just a month before? And more importantly, what is the timeline for this end game? Half of me wants them to go fix it now. Make the cause of the nightmare go away. Let us watch Sam's breathing slow and become calm. Say goodbye to the oxygen cannula. Kick the viagra away from his regimen until he's a spry 50 year old needing "assistance". The other half of me realizes that we're potentially talking about brain surgery and the ridiculous implications associated. Outside of those two halves, is perhaps the greatest worry. What if they fix his brain and this fistula, but his heart remains broken?
Seven days. Bookends of our tremendous adventure with Samuel Ryan Pierce. In weeks' past, the bookend where reversed. We'd start with the potential bombs in the road and then be comforted by a calming Dr. Pete. This time, we felt our courage build up as we got a few more questions answered by such a wonderful doctor. I wonder if it was meant to be this way. Maybe this time, instead of getting bad news that we needed support on, we just need extra courage and confidence to battle our fears as we head into a really big test. Maybe the scariest thing this week will be the lead up to our meeting on Thursday, and not the results themselves.
Maybe. Hopefully. For now, we just head into another seven days. Two more appointments. Another major test. And probably a few more scares, directly from Sam himself. Just another "regular" week with little Sam. Anything less would somehow feel weird.
When you have an infant, you make countless lists in your head of silly things that you want to address with your pediatrician. Is he eating too much? Not enough? Sleeping too much? Not enough? Staring too long, not staring long enough, smiling too early, not smiling at all, barely smiling half smiles and do you count them? We join a fraternity when we become parents. It's Alpha Chi Worry. And we catalogue those worries into lists so that we can gain some insight and/or peace of mind when the inevitable trip to the doctor's office next occurs. For us, Sam's condition remains a source of constant questions - is he okay? How long will they wait? How is his heart? Is it holding up? Is it breaking down? In addition to those regular questions (well, for us...), Sam has given us new reasons to worry.
When we brought Sam home almost a month ago, his right hand had suffered trauma at the hands of the last IV. There was a large bump, and you'll remember us wringing our hands over the temperature differences of his two hands. While the temperature difference has become less noticeable, and the bump slowly disappeared, we now find ourselves getting to know every inch of little Sam. And Elisa noticed that Sam's right hand seemed a bit bigger than his left. Add it to the list. When you Google that, you either get unhelpful information that says if that happens, it's always a reversal in hands, or you read about horrible diseases and genetic problems that you wish you hadn't clicked on. We also had experienced a couple of car seat terrors - pulling the little man out and finding two purple feet staring back at us. One time, his feet felt violently hot. Another, very cold. So we couldn't just chalk it up to a temperature issue. That went on the list too. But it was the last item on the list that had us most worried.
Sometimes, our greatest tool and scariest knowledge is through our pulse oximeter. Every night, we hook that little red light to one of his feet and we watch...it's a constant reading of his oxygen saturations and pulse. And, for 3 weeks or so, we only noticed that we got an alarm on oxygen saturation when Sam decided to bear down while crying in his infinite attempts to resemble a grape. But on Tuesday night (last week), Sam's oximeter started showing tremendous drops in his saturation without the grape routine. He'd just fidget around and would go from 98% to 85% in a matter of 15 seconds. The beeping would begin and we'd sit, wondering if it would come back up. We also seemed to see that Sam's peak saturations weren't nearly what they usually saw. Sam liked to hang out in the 97-100 range, but we were getting readings in the 90-94 range. Sure, you might think we're just being overprotective, but it's the benefit and horror of having a tool like this. You seek truth in it - a sign that Sam is okay or a red flag that something's wrong. Sam decided to go through this routine for 3 days - enough fear that I called Dr. Pete in advance and he told us that as long as Sam recovered from the drops, we could make it to his Friday appointment (he was adamant about not going to PCMC when I inquired). So, we added that to this list - the big one. "Are the saturation changes a greater sign of heart failure?"
Friday came and we headed into see Dr. Pete, hopeful that he would give us information that fell into the "peace of mind" category. For the most part, I think we got it. But I also was struck by the feeling of reality - Sam's really sick. He has a serious condition that needs to be fixed before we can start talking about normal and healthy. Because he's not, and when you have a sick kid, you need to get used to scary phrases coming up in conversations - you know, things like "first signs of heart failure", "nothing to worry about at this point", and the like. But before we get to our list of three items, let's start with the fever that's catching the nation. What does Sam weigh this week? It's a sad fact that I spend my time leading up to an appointment doing calculations of 1 ounce gain per day and what we should expect. But when Sam had last seen a doctor (10 days before in Cardiology), he was a healthy 11 lb. 8 oz. By my calculations, he needed to be at 12 lb. 2 oz. to be on track at an ounce a day. So onto the scale he went and we watched the numbers rise. Sam, like the champ that he his, just sat and let the weight drop onto the scale. 10...11...12...finally landing at a healthy 12 lb. 1 oz. Yep, he's still putting on weight. Which is good, because he's starting to resemble a linebacker.
With that worry out of the way, we got down to brass tacks with Dr. Pete. We started with the hands. Dr. Pete did some comparisons, and gave us the scary (but somehow reassuring) "there's nothing to worry about at this point." He did tell us that there are some conditions that result in one half of the body being bigger than the other, but he also was kind enough to make a joke (well, Elisa rolled her eyes...it's nice to know she doesn't only save that for me!) about a teenage boy getting a larger and hairier right hand than left. He did tell us that when you have a sick child, your knowledge of their body becomes an impressively accurate accounting. Our eyes, because we're so focused, can literally distinguish millimeter differences. In the end, he told us that no person is perfectly symmetrical, and while he could see a slight difference in Sam's palm size, he didn't see a difference in Sam's fingers...indicating that it probably isn't a big deal. When I inquired about the possibility of damage and healing from the IV, he said it was possible...especially, since you can still clearly see the affected veins in his hand.
We moved onto the feet. I feared that this would be a sign of problems with Sam's heart. This was an easier one to overcome. Dr. Pete explained that while it can be a sign of poor perfusion (oxygen saturation), it's more likely to be due to stagnant blood. When a child or baby isn't moving their feet around to get the blood flowing, you will see the purple appear in the feet. We had specifically seen the phenomenon when Sam had been in the carseat for awhile. That seemed to be reasonable enough of an explanation, so we dove into the saturations and his problems of the past three days.
Dr. Pete wasn't overly concerned He said that it was very good to see that he had recovered within minutes when the saturation problems had occurred. He also helped us to see that Sam had seemingly returned to normal over the last day. In fact, Dr. Pete made me feel like my "it will be okay, honey!" approach that I usually take (to my detriment) might have been a bit more spot on. When he started having issues 3 days before, I noticed that he seemed to sound a bit hoarse. In the dead of night, I openly wondered if he had a bug. Dr. Pete believed that this was probably the case. He's surrounded by brothers that are constant germ magnets in 1st grade and Preschool. Bugs will hit Sam. Dr. Pete believed that the bug that he might have had probably just made saturation a little more difficult. Okay, whew. But through the rest of our conversation, we did get a slightly worrisome comment. We inquired, almost off the cuff, about a persistent cough that Sam had been dealing with since he had come home from PCMC. While I feared bad news with the feet question, I expected this one to just be a brush off. It wasn't. Dr. Pete let us know that a cough like this could be a clear sign of heart failure. He did calm us by saying that Sam was gaining weight, looked good, and was thriving. But I will tell you - when you hear that and then he coughs (even though you never really worried during the hundreds before), you feel your heart beating a little faster. Since we heard that, every cough feels scary. Everything about Sam's medical condition is scary. Yes, even a cough.
Still, we left Dr. Pete's with our list of questions answered. We went into our weekend, ready to clean up the Halloween decorations that Miles had begged us to put up for Thursday's festivities. It wasn't until tonight...a regular Sunday for most, when people are looking forward (or dreading) the work week ahead. For us, we look at Wednesday and Thursday with trepidation. We started this 7 day period with the old - good old Dr. Pete, answering all of our silly and worrisome questions. We will end it with the new. New results of the true culprit that has caused Sam so many problems in his young life. On Wednesday morning, we head back to PCMC for a 7:00am appointment. There, Sam will get another MRI. General anesthesia. Intubated. And magnetic images of his brain and this troublesome fistula. We'll worry about him being under anesthesia. We'll hate that he'll grunt because his throat will be agitated from being intubated and getting help breathing. But the real worry comes on Thursday, when we have a 9:00am appointment with Dr. Brockmeyer. Has the fistula grown? Are they as confident that they can fix it now than they were just a month before? And more importantly, what is the timeline for this end game? Half of me wants them to go fix it now. Make the cause of the nightmare go away. Let us watch Sam's breathing slow and become calm. Say goodbye to the oxygen cannula. Kick the viagra away from his regimen until he's a spry 50 year old needing "assistance". The other half of me realizes that we're potentially talking about brain surgery and the ridiculous implications associated. Outside of those two halves, is perhaps the greatest worry. What if they fix his brain and this fistula, but his heart remains broken?
Seven days. Bookends of our tremendous adventure with Samuel Ryan Pierce. In weeks' past, the bookend where reversed. We'd start with the potential bombs in the road and then be comforted by a calming Dr. Pete. This time, we felt our courage build up as we got a few more questions answered by such a wonderful doctor. I wonder if it was meant to be this way. Maybe this time, instead of getting bad news that we needed support on, we just need extra courage and confidence to battle our fears as we head into a really big test. Maybe the scariest thing this week will be the lead up to our meeting on Thursday, and not the results themselves.
Maybe. Hopefully. For now, we just head into another seven days. Two more appointments. Another major test. And probably a few more scares, directly from Sam himself. Just another "regular" week with little Sam. Anything less would somehow feel weird.
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