Wednesday, May 9, 2012

We can rebuild you...

This is hopefully the last "holy shit, my baby is being cut open right now" post I have to write for a very good, long while, but yeah, this is one of those. Your new heart is en route, you are already knocked out and filled with tubes, wires, and other scary shit I don't really want to think about, and a nurse just stopped by to tell us that they've made the first incision. (Something about that phrase feels so TV medical drama, so scripted.) Honestly, the gravity of the situation has yet to fully descend upon me. By the end of the day, your heart - that damaged and only just barely functional pile of defective cells that has kept you going for three months - will be replaced with a healthy new one. A part of my brain has just skipped ahead to the reality in which you are a healthy, happy, growing little boy who just happens to be on shit-tons of medications and who regularly need to check in with cardiologists. That has to be the reality we inhabit.

Right now, my brain is just skipping around like the music from a CD walkman that keeps getting jostled. I can stay on track for a couple of seconds, then something jiggles loose and I drift into silence for a little while. Even though this morning started completely normal, and we are (thankfully, as everyone keeps reminding us) well-rested and appropriately fed, and I got to spend pretty much the whole morning snuggling you, everything feels like it's skipping around. I'm reading NPR, half-assedly chatting with your Aunt Stephanie, writing, vehemently trying to convince myself to eat and drink (your Dad got me a mango smoothie and nutella wrap from the awesome burrito place across from the hospital), and watching out the window as people smoke directly underneath a no smoking sign outside the hospital. Nurses in the "liaison program" have been stopping by to keep us posted on your progress, but waiting rooms do not actually operate within any normal parameters of time. 

Last night, I felt inexplicably like I had to snuggle you longer and more seriously than normal...not that I really ever let you be put down while we're around. I had a tough time falling asleep, and had funky (but utterly irrelevant) dreams. This morning, your Dad and I woke up like normal. I've only been showering every other day most of the time we've been here (mostly to give my hair a break from constant blow-drying, but also, who the hell am I trying to impress?), but I chose to shower today even though I basically didn't need to. I opted to wear really comfy clothes, even though they're a little schlubby. We got to the hospital at a normal time - around 8:15 - and wandered in to find you whining a little because you were awake and bored. Your nurse came in, introduced herself, and then proceeded to ramble at us about her family, love of lobster, and a number of other seemingly irrelevant personal details. (We'd never worked with her before, but she basically did nothing all morning but kick asses and take names to make sure everything you needed got done, then left us alone to cuddle; she wins.) Just when your Dad and I started to think she was trying just a little too hard to be friendly, one of your transplant doctors came in to the room.

Now, I don't like to label people based on appearance or mannerisms under any circumstances, but when every day brings new doctors, nurses, specialists, and other assorted and sundry support staff who introduce themselves with the disclaimer "I know you've met so many people, but I'm..." it's crucial to latch on to any distinguishing markers we can. For example, we've had Hipster Cardiologist, Twelve Year Old Doctor, No Confidence Nurse, and Scarily Overenthusiastic OT Lady, but today, it was Calvin Klein Model Transplant Doctor who walked in, all smiles, and said "we're getting a heart today." I don't think either your Dad or I were particularly shocked (for reasons I will detail below), but it definitely changed the course of our day. Instead of just sitting around and quietly reading, snuggling, napping (you, not us), eating (you and us), and puttering around on the internet, we gave you glucose water instead of formula (then made a ton of jokes about pumping you full of Kool-Aid and handing you to the surgeons all hyper and sugar crazed), I went with you for an x-ray, you got an EKG, we gave you a bath (which you hated), a nurse gave you a pre-surgical scrub/bath (which you hated even more), and then you napped on me until we were given the all-clear to go to the OR. A little before 1:00, I handed you to the most enthusiastic, friendly, and potentially baby-crazy anesthesiologist on the face of the planet. Your Dad and I locked down seats in the waiting room, chatted briefly with your surgeon and our social worker, and then started waiting. I hate this kind of waiting.

So why the hell wasn't this surprising or shocking? We knew this was coming eventually, but  it had gotten terribly familiar, easy, and comfortable to just go through our normal routine here. We knew that we'd have a day - hopefully not a middle of the night - when a nurse would periodically check in with us to share such cripplingly odd details as "they just put him on the heart/lung machine and they're working on dissecting around the old heart." That really happened. We also knew that we stood a good chance of having a few misfires: a few OR preps that ended with a heart going somewhere else because it just wasn't right for you. There wasn't ever going to be a true "holy shit!" moment, rather we fully expected to just roll gently into fear and excitement. Still, we waited one month - to the day - from you being listed for transplant to your crappy heart being put into a medical research library. Nothing suggested this would happen so soon. I don't want to over-inflate my prognosticatory tendencies, but I totally saw this coming. How, you might wonder?

Indicator #1: Eerily perfect timing. It's been exactly four weeks, to the day, since the decision was made to list you for a heart transplant. Also, we had started talking with your cardiologists back in Portland about possibly transferring back there to wait for a heart to become available. After your Dad and I totally spaced out a meeting to discuss details yesterday afternoon, I was really anxious about looking like an asshat in front of your cardiology team, but everyone was so excited about your new heart this morning that any transgressions on our part were entirely forgotten. Plus, we got to the hospital just when everyone started looking for us to share the news. No two AM frantic call, no panicked hunting us down while we were out grabbing dinner.

Indicator #2: Your Aunt Erin's dedication to and success in her chosen career. As you will shortly come to know, one of the people who loves you most fiercely in all the world is your Aunt Erin. She has been on call, ready to be here at the drop of a hat from before you were even born, to a point where she has recently put off making substantial plans that would make her in any way unavailable. There was, however, a conference that put her out of town and essentially unaccessible today. A few weeks ago, she mused to me that you were almost definitely going to get a heart when she couldn't possibly be available, and of course, that's today. 

Indicator #3: Mommy gut. I knew something was going on last night. I hoped it wasn't anything bad looming on the horizon, but as soon as we got in this morning to find you plastered with your trademark cranky, judgmental face with irritated whining coming from behind a bink, I knew you were fine and it had to be something else. Yup.

Indicator #4: A balloon. Until recently, I found the pervasive proliferation of balloons in pediatric facilities kind of weird. I wanted no part in it. Much of this can be owed to my neuroses about balloons, namely that they seem to possess an almost lifelike quality that makes me extremely sad when they deflate, or "die." Within a day or two of you being listed for a transplant, I caved to the collective peer pressure of being in a children's hospital and snagged you a balloon from the "Free! Take one!" collection at the front desk of the ICU. Apparently balloon technology has progressed substantially in the last decade because this sucker just wouldn't stop floating. Somewhere in the last few weeks, it got into my head that this balloon wasn't going to deflate until after you had a new heart. I knew it was going to outlast your old heart. It has lost some girth, and it's gotten a little floppy, but this morning was the first time I saw it sag on it's ribbon. 

Your Dad and I were told within the last hour that your new heart is in, it's working, and you just need to get stitched up and situated in the ICU before we can see you. Of course I'm relieved, but once again reality is just not catching up with me. I don't even know if seeing you in the messy pile you'll be in will make me really accept this situation as something that has actually happened. Your surgeon told us that as soon as you were put on bypass (having all the work of your heart and lungs done for you), your original heart started to die. Instantly. Of course this was the right course of action. Of course it was going to happen today. Of course your Dad and I are overwhelmed with relief that one of the most important yet also tragically flawed parts of your body has been mulliganed. Of course I was terrified and crushed by your last operation; it ultimately wasn't enough. I've been saying "of course" a lot today, but the sheer inevitability of this happening seems so obvious.

1 comment:

  1. Sarah Kat, Thank you for such a wonderful candid description. It makes us understand a little better what you are all going through, and even more than anything, wishing as hard as I possibly can that this is just the beginning of a truly marvellous life for Hudson, you, Ryan and your families ... and future families!.
    Much love and hugs from Brizzy, Downunder.
    (Cuzzie) Pip Grant-Taylor