James is munching on a mum mum (mango cardboard flavor) and enjoying not being in writhing pain for a bit. The fact that the mum mum, which he can feed himself, heaven forbid you help him feed himself. In many ways, James is fiercely independent. Today he felt more himself and we had to remind ourselves that when James feels well, he really just is not a cuddly baby. He likes to be on his own, to explore and to do what he wants to do. He gets annoyed when you hold him in one spot for too long- he wants to choose his own course. Sit his own way, lay sideways on his stomach, and feed himself without your help. It's his natural state. Laying on your chest is something he does only when he's sick, when he needs you. When he's well he doesn't.
The fact that we had time to remember this today is a testament to the fact that James feels much better than today than yesterday. The night did not go well. James threw up everything, his zofran, his lortab, his prevacid, everything. He went back on fluids. We switched to IV zofran and he kept throwing up, even with the max dose. He clutched his head constantly in pain. The go home plan, which is dependent on his oral meds, went right out the window. On one hand however, I'm glad we were here and not home when James spiraled downwards.
After James threw up on the way back from his flow study- all over me and the paramedic transport, a meeting with the oncologist was in order. After the long night, Kara and I were extremely harried and more than a little frustrated. One thing I like about this oncologist is that he has a very reassuring, consistent presence. His mood seems very stable, which when you're up and down all the moving from crisis to crisis, is a welcome trait. He also has a tendency to dress in what I would call Country Club chic. If our neurosurgeon cultivates the sports car and colorful, expensive suits look- the best analogy I can think of is the "Shark Tank" panelists- the Oncologist with his polo, dockers, and glasses, feels more like someone you'd meet at a country club who drives off in a Lexus. For whatever reason, I find country club chic reassuring. Given that he's probably spent three or four hours reassuring over the last few days, the consistency and the patience is greatly appreciated.
The talk with the oncologist resolved some important issues. He reassured us that though James' recovery from the surgery was on the wrong side of the median, he was still well within the acceptable range and none of these complications would interfere with beginning chemo. We changed James' medications and introduced IV pain meds to control his pain, though the initial dose snowed him completely, we eventually succeeded in getting a dose that kept him relatively content and still somewhat alert. We also reintroduced the steroid- we'd prefer to be off the steroid, as it can interfere with chemo, but it helped James in the past. The combination of these medication changes certainly helped stabilize James. he's not writhing in pain anymore, his vomiting appears under control, and as a result everyone is much less stressed. The other bit of good news is that his flow study which was not going well yesterday resolved itself overnight, all clear. We're an audiology test and an admission away from starting chemo, and if we can transition successfully to oral meds, we'll be home before that begins. It's possible we may not be however, and we're trying to be comfortable with either outcome. In the grand scheme of things, days at home are unimportant compared to beginning James' treatment.
The other good news today was that James' most recent CT scan came up clear yet again, confirming that he's not suffering any increased pressure in his ventricles and developing hydrocephalus again. James has had four CT scans now. Back in April, we were on the fence about even doing one because of unlikely, but potential, complications. They're routine now- we know exactly where the room is. Any potential complications are immaterial given James' condition. Once again, priorities have shifted. For memory's sake, here's a picture of Jamesie getting a CT. We call him "baby burrito" because of the way they wrap him up. He hates it. As I said, he likes to wiggle.
In the scheme of procedures James goes through, it's small one. It's no MRI with general anesthesia. Not even a rapid MRI. It still seems bizarre to me that these are things I actually think.
In any case, James appears much improved today, and we're glad. We're still worried that when we try to transition to oral meds the cycle will start right back up again, but we're hoping that this time, with a little more healing, James will be himself for longer. We miss our wiggle worm.
As always, thank you for thinking of James and praying for him. I continue to be overwhelmed by the number of people, from strangers to people I haven't spoken to in years, who have been in contact with us about James.
