Well, we’re at day 11 now, nearly a week after the end of the chemo, and a couple days after transplant. 2-3 weeks to go.
The drs say today through Tuesday or so are usually the hardest on a patient, and Ezra is apparently right on schedule. Last night he was moaning and tossing and turning a lot, and wound up getting morphine a few times. By this morning, he was low on nearly all his chemistry counts (sodium, electrolytes, etc), and has been getting lots of those via IV all day long to compensate. He’s been on a morphine drip since the afternoon which has kept him mostly asleep all day and he’ll most likely continue to sleep through the weekend. His fever is currently 104 (40 Celsius, which is what everything in the hospital is measured in), and he’s on antibiotics as well to help fight that.
He still can’t eat, and isn’t drinking either right now. His mouth and throat are hurting from the mouth sores. The IV is getting him TPN (a solution with a lot of nutrition), lipids (fat), and keeping him hydrated. There’s actually 7 different pumps on his IV pole all delivering stuff into his IV, and they still have to give things via syringe orally sometimes because there are no free pumps on the pole.
We’ve got him laid out on the couch with us, and it’s been oddly peaceful here. Everything Ezra is experiencing right now is normal for this point in a stem cell transplant stay. So while it sucks to see him hurting and so out of it, we know it’s necessary and will come to a good result. We’ve got him laid out on the couch with us, and have snugged up the bedchair thing against the couch, which is pulled out – creating some sort of crippled quasi-queen bed monstrosity which the three of us are spending our weekend on. We’re surrounded by pumps, monitors, power cords, beeping noise, glowing lights — and tubes draped across the whole of it connecting Ezra to the equipment. Nurses are in every hour or two now. They change every time it’s 7 o’clock, and I find myself not knowing any by name, but remembering faces and demeanors. I’m always surprised when it’s 7 again, since it seems to come out of the blue – time is weird here.
Occasionally we leave the hospital one at a time, and it’s nice. I took a walk today to Starbucks, which my phone said was close.. and it was, but it wound up being in the lobby of a Hilton, closed at 5 (it was 6), and so I wandered to some [better] little privately-owned coffee place my phone showed me, and had a mocha. St Pete is a nice little walkable town. Last night Robyn went over to the local tea place and had something to drink while some live music played. Good little break, right on the water.
We met with Charley’s neonatologist who was ending her 3 week rotation in the unit, and she let us know Charley is doing well, but won’t be able to come home for a minimum of 2-3 months, possibly longer. His main areas of focus are the brain, the lungs, and the eyes. Charley is developing well everywhere, and the shunt in now is finally working how they’d like – his head is noticeably less alien and more baby. 🙂 They still won’t know if this will cause any mental development issues until well-after we get him home most likely. His lungs are bad, as they have been, and the focus is trying now to finally wean him off the venitlator – which they think they’ll be able to do in 2-3 weeks. His lungs will be ok, but they need time.
One of the issues of being on oxygen so long while so premature is it affects the way the eyes develop. At this stage in a fetus, the blood vessels that attach the retina to the clear gel at the front of the eye are stil developing. He’s obvioulsy not a fetus now, and has (necessarily) been on oxygen since he was born since his lungs don’t work fully yet. An excess of oxygen can cause these blood vesels from the retina to branch out in incorrect directions, which left untreated could cause blindness. This is, however, relatively easily treated with laser surgery, so they are keeping an eye on him (no pun intended… or was it). He already is a level 1-2, but they say there’s no need for any corrective surgery til het gets well past that. Either way, it shouldn’t be a lasting issue – but is a focus for now.
Thank you guys all so much for your continued prayers, encouragement, messages, texts, giving, and the occasional delivered pizza or hummus and cheese sandwiches. We’re encapsuled in a world we didn’t even realize existed a year ago, and the support we’ve gotten from all of you is flat-out beautiful. When we are on the other side of this, we’re confident we’ll be involved quite heavily in doing the same for folks in similar positions.
I work online for a living, and live in a constant world of geekery. Although I’m known by my real name on the net these days, I used to have a “screen name” of poetic_folly, which I came up with as a sappy philiosophilcal 14 year old in Seattle. It described in two words my views on life, and still does for me. Life is full of mistakes and crap, both big and small, and it’s the experiencing of these, the coming out on the other side, the helping, love, and friendship you find through them that makes life beautiful. We fall down, we get up. Everyone *knows* this stuff happens, but when you SEE it and LIVE it, it’s incredible to feel the depth of emotion and the strength of connection experienced through these events. Both Robyn and I’s thoughts and views have been changed on so many levels throughout all this – priorities, compassions, reliance on Christ, attentiveness to each other, and even who God is. The ferocity of a warrior is often hidden off the battlefield; the gentleness of a healer is tough to notice when you’re too busy to need it.
I’m rambling. Chat at y’all in a bit…