Woop-de-doo, Charlie’s VP shunt was re-internalized today and he is no longer tethered to a device that is collecting his cerebrospinal fluid. I wonder if my layperson's attempts at medical descriptions ever make people woozy. I’m so used to this stuff now that I've lost all perspective! I still laugh every time I think of that time last week when a neuro resident spilled some brain fluid on Charlie when he was getting it for the infectious diseases folks and instead of freaking out Charlie giggled loudly and said, “He shpritzed me!” The only time that I felt a little dizzy was when we were downstairs for the emergency midnight CT scan the other night and the bandage on his head came off and I saw the large stitches running across his scalp for the first time.
The surgery happened earlier than we thought and, according to the doctors, went really well. No complications replacing the shunt and they found a good place near Charlie’s liver for the catheter to deposit the cerebrospinal fluid. It’s been about eight hours since the surgery and unfortunately Charlie is still in a fair amount of pain and on his third dose of morphine. He’s answered some questions from us and the nurses which is reassuring but no matter how normal such post-op discomfort is, it’s still agonizing to see your child in pain, especially after everything he's been through over the past two weeks. There’s a lot of concern about brain activity after this kind of surgery so you can’t just let them sleep it off, you have to make sure they’re okay by waking them up periodically and seeing how they react. We’ll stay by his side through the night and hope that he feels better by morning. The photo above was taken shortly after he came back to the PICU. The little mark on his forehead was where Dr. Danielpour wrote “Yes” with a magic marker to make sure they cut into the right side of his head!
This morning, which now seems like a million years ago, was difficult for Charlie because he was NPO and was begging for food. We promised him he could eat anything he wanted after the surgery but now the doctor has put him on a clear liquid diet until he gets another CT scan at around midnight tonight to see how the shunt is working and how his ventricles look. I was worried about that but eating seems like the last thing he’s interested in at the moment. The surgeon said he was able to remove some “adhesions” from Charlie’s brain while he was in there. Not sure what that means exactly but I’ll find out. After we leave the hospital, we’ll have to see Dr. Danielpour again in around 10 days for him to take out the stitches. It’s amazing what Charlie has been through since he was born (this was his tenth major surgery in less than four years) and a miracle that for most of his life, other than the first five months and the last two weeks, he’s had such a completely normal existence. Better than normal!
Kendall and Charlie are both sleeping right now and I wish I could but I doubt I'll get a wink. I know I'll have a completely different perspective as soon as Charlie begins to seem like his old self. I'm waiting patiently for that first smile! Please keep those prayers and good thoughts coming just a bit longer!