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.
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