Monday, April 2, 2012

...but I want to cross the bridge now...

We're in Boston. From the beginning of your whole ordeal (and this is beginning in utero), people asked us whether we were going to come down here for a consult, or for any of your operations, or for anything at all, and we consistently said that we were comfortable and happy with the medical care we were getting in Maine. We were...more or less...but I kept getting edgy when little problems were left not only unresolved but were sometimes even written off as "no big deal" when they were clearly anything to be concerned about. We were told again and again that cardiac patients - especially infant cardiac patients - are tricky because until something is obviously wrong, it's impossible to preempt any problems with preventative treatment. Basically, until you're in crisis, even the most bizarre changes have to be more or less brushed off.

Two weeks ago today, I took you in to an emergency appointment with cardiology. Your chest had started making this godawful clicking, grinding noise that made me think your sternum had separated. Turns out I was right (a fact we didn't confirm for two more weeks), but no one seemed particularly concerned; in fact, this is apparently kind of common, and we were told to just let them know if things got worse. Your breathing was a little funky, too, but because your oxygen saturation was exactly where we wanted it, your heart rate was rock solid, and both your echocardiograms and EKG's looked fine, we were sent home and told to just keep an eye out for any changes. My mommy-gut was still unsettled, but your cardiac nurse practitioner told us that treating the problems you were presenting was a bridge we couldn't cross until we got there.

This past Friday, your breathing still just wasn't right, your chest was popping like crazy, and you had slacked off your eating to a point where I was worried about hydration (a major issue for anyone with your heart condition). We went in to see one of the cardiologists, and he spent over an hour observing you, only to decide that there was nothing obviously wrong. Once again, we were told to just watch for any new patterns, and home we went. Friday night you did a little better eating, and actually had a great night of sleep. Saturday was a non-stop fight to get food into you, but other than being a little more sleepy than usual and a little less smiley, you seemed fine. Although the mommy-gut was sure we were prolonging the inevitable by not going to the hospital yet, I let myself be convinced that you were either just getting over a cold or feeling kind of crappy after a massive bundle of vaccinations earlier in the week. I've been told that it's a fairly normal baby thing to be perfectly healthy and stable, then nosedive suddenly into serious illness, but yesterday caught us completely by surprise.

Saturday night, you and I fell asleep on the couch and had a pretty normal, snuggly night. You took a bottle while still mostly asleep, like normal, and woke up kind of cranky and fussy around 4:00AM, like normal. Your Dad has been wonderful about letting me get extra sleep on the weekends by doing your 5:00AM antibiotics and meal, then the 8:00AM as well instead of me needing to wake up for the latter, so after he was up and moving, I went to go catch a few uninterrupted hours of sleep. Part of me knew we'd end up at the hospital if you didn't eat well, but I figured we'd cross that bridge when we got there.

I hope you grow to be the rock-solid sleeper that your Dad is rather than inheriting my unfortunate tendency to wake up - and I mean fully, completely be shocked into consciousness - with the slightest sound or movement. I almost never make it through a night without waking up at least once or twice, and my lightest sleep is typically right after I've fallen asleep, so having a disturbance-free first hour or so of rest is key. Yesterday morning, I heard you start to fuss not long after I crawled into bed, and was aware of you crying off and on as I drifted in and out of sleep. It seemed like it had been a matter of minutes since I left you and your Dad out in the living room, but suddenly your Dad burst into the bedroom, panicked because he hadn't been able to get you to calm down in something like an hour and a half. My first thought was disgruntlement that he couldn't get you to settle down on his own, but when I heard and saw how hard you were crying, I started to panic a little, too. We called cardiology and were told to go to the ER - not because it was an emergency, but because the practice had moved to a new office over the weekend and they didn't have anywhere else to check you out. I got you to calm down enough to put you into warm clothes and the car seat, and we casually made our way to the hospital.

Here's the funny thing about the ER: no matter what shape someone is in at home, the second they walk through those doors, everything gets worse. This might be the same phenomenon as a nasty cut feeling better when it's covered up with a band-aid so you can't see how bad it is, or how a terrifying movie isn't nearly so awful if you cover your eyes (even if you can still hear everything and see the looks of horror on the faces of the people stupid enough to keep watching). At home, you seemed to be breathing a little fast and you were a little pale. At the ER, a triage nurse walked over to us...and suddenly you were in respiratory distress and your hands, feet, and lips had gone purple. You were swarmed by a dozen doctors and nurses who had never worked with you before, so I had to ramble off your complete medical history half a dozen times while everyone panicked about your numbers (which for any other baby look hideous, but which for you were actually fine). Your Dad ran off to make phone calls, and meanwhile the decision was made to admit you to the PICU.

We were given the dreaded direction to "go ahead and find somewhere comfortable to wait while we settle him in." I don't know why, but whatever it means to settle you in apparently includes aggravating you to a point where you nearly crash. This has happened several times, and yesterday was no exception. What should have been forty-five minutes of poking and prodding turned into three hours of us waiting and the pit of my stomach sinking deeper and deeper. We came to find out that you nearly coded while you were being sedated, a decision that was made so that you could be intubated and have your heart do as little work as possible. Your cardiologist did an echocardiogram and confirmed that your heart function had deteriorated in a way that both couldn't be fixed and didn't have an obvious cause. He presented the option of transplant, but was emphatic that we wait until the next morning to decide if that was going to be our course of action. I asked for more information, and was told "we'll cross that bridge when we get there." This time, waiting wasn't an option.

Hudson, I truly hope that you never need to make such a dramatic decision about anyone else's life, but if you do, I hope it's as easy for you as this was for us. With two choices - pursue a transplant in Boston or just make you comfortable until your heart gave out - we didn't hesitate for a second. Within an hour or so, arrangements had been made to move you to Boston the next day, but within a matter of hours after that, the team from Children's Hospital Boston decided to transport you that night. I went with you in an ambulance (and by that, I mean the hospital-owned spawn of a monster truck, ambulance, and child's coloring book explosion) and your Dad drove behind us, and we arrived in Boston a little after midnight.

Sometime we'll be outside during the summer, and we'll drip some juice a little ways away from an anthill. What happens next will be a pretty solid illustration of what happened as soon as we got you into the Cardiac ICU. Almost twenty different doctors and nurses swarmed and mobilized to get you comfortable and settled in, and within the hour that your Dad and I managed to stay awake enough to fill everyone in about as much of your history and condition as our brains would let us regurgitate on almost no sleep, your numbers started to stabilize. Overnight, everything stayed more or less the same, and today has been delightfully boring.

I still can't bite back the terror. Yesterday, your cardiologists in Maine made things sound extremely grim, and while everyone here has been so proactive as to almost seem optimistic, this is serious. Seriously serious...with a side of serious sauce and serious fries. There's no forgetting the fact that we are now looking at a survival rate below your originally projected 95%, no matter what our course of action, and no matter how stable you seem. I knew every successive hospitalization would be simultaneously easier (from a combination of experience and simply being beaten into emotional submission) and harder (because with every day, you're more our little boy), but this is just a whole new ball game. Your Dad and I are trying to make something of a sport out of learning the ropes in a new setting with new people, and the fact that this really is one of the best possible places for you to be is comforting...but still.

While I'm writing this, your Dad is passed out face-down on the window seat/parent sleep area in your room and I'm just barely keeping myself awake. Even though you're sedated, you've had a few moments of fussing yourself awake because you've been congested or accidentally in a weird position. It's really comforting to see you do anything even vaguely normal after such a dramatic, almost unbelievably sudden transition from sleeping comfortably in my arms to being hooked up to half the medical world on a hospital bed. I'll write more about this bizarre but vital place where we're likely to spend the next few weeks - maybe months - of our lives, but I think I should wake up your Dad and try to find the cafeteria.

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