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!
Danny, thinking of you and Kendall and Charlie and reading every update, which feels like the only thing I can really do from here. Thanks for keeping the rest of us so much in the loop. In friendship, Sue
Posted by: Sue Katz | February 25, 2013 at 09:02 PM
Danny...I will continue sending all my good thoughts and hugs to you,Kendall and your amazing little boy. Charlie is a trooper and a very lucky little man!!! I'm sure he will be up and picking out his next star to stand on before you know it!
Posted by: Arlene | February 25, 2013 at 09:02 PM
Always extra prayers from the best little patient in Cedars Sinai. Hope he wakes up tomorrow with less pain and his usual sweet smile.
Posted by: margalit | February 25, 2013 at 09:04 PM
El na refa na loh
El na refa na loh
Posted by: davi | February 25, 2013 at 09:20 PM
Blessings and wishes he'll soon be happily sitting up and eating and getting ready to go home.
Posted by: A | February 25, 2013 at 10:09 PM
Such good news! Can't wait for the post where you say you're all HOME!
Posted by: heather... | February 25, 2013 at 10:38 PM
Thank you, Danny, for posting again. I wouldn't have been able to go to sleep without hearing from you. All my love to Kendall and the boychick.
Posted by: Cynthia | February 25, 2013 at 10:43 PM
May I say that, as much as Charlie never ceases to amaze me by how incredibly strong and patient he is, I'm completely stunned by how your sense of humour never seems to fail you, Danny, not even in the worst imaginable circumstances. I'm sure that's what makes an outstanding parent instead of a great one. All the best for Charlie.
Posted by: Dunja | February 26, 2013 at 12:28 AM
Danny,
I'm thinking about the 3 of you almost every minute of the day. This is my first Facebook post because I just learned how! (I swore I wouldn't) Anyway, thanks for keeping us in the loop. I so much want to help but I don't know what to do. Hopefully, you'll let me know. Meanwhile, lots of love and hugs, and positive thoughts for Charlie's complete recovery.
xoxox Marcia
Posted by: Marcia Rodd | February 26, 2013 at 01:09 AM
Thank you, Danny, for taking the time to post the updates for all of us Charlie worriers. Sounds like everything went fine. Can't wait to hear Charlie's stories about this whole medical adventure.
Posted by: Peggy Shecket | February 26, 2013 at 03:17 AM
Picturing you awake in the hospital room in the night--I'm sending love. I hope this day post-surgery is the beginning of things getting better and better.
Posted by: Marjorie | February 26, 2013 at 04:33 AM
Morphine is really scary, I now know. So, of course, is a child in pain. And big, scary stitches. But they ask mean mending is happening. May he mend quickly and well...
Posted by: david | February 26, 2013 at 04:33 AM
Hurrah! Excellent news. At the same time, I can't even imagine what you're going through (even less what Charlie's going through) in terms of worry and pain and oh everything. Lots of love. What a champ.
Posted by: Kate | February 26, 2013 at 07:13 AM
All three of you are absolutely valiant! Best wishes for a thriving recovery for all!
Posted by: Karen | February 26, 2013 at 10:22 AM
So glad to know the operation went well, Danny...Prayers and good thoughts continue coming your way for the further healing of your darling Charlie...Sending big hugs to you all.
((((((((hugs))))))))
Posted by: OldOldLady of The Hills | February 26, 2013 at 10:54 AM
Sending good wishes to you, Charlie and Kendall xo
Posted by: catherine W | February 26, 2013 at 03:08 PM
Very happy to read your latest update. will continue prayers and sending white lights to Charlie and the rest of the family. Let's hope he's back to his ole self soon! You're a great family…very
inspiring!
Posted by: Judy F | February 26, 2013 at 05:12 PM
Danny, Kendall, Charlie...so glad to hear that all went well in the surgery. I hope all the news continues to be good as Charlie returns to his normal charming self! Thoughts and prayers continue.
I hope you'll all be home soon.
Posted by: Donna | February 26, 2013 at 05:16 PM