CJ's Thumbs Up Foundation

CT in the ER

Last night was not bad. Charlotte still had head pain but we got her out of bed and she scarffed her dinner while we watched "Enchanted" (very cute movie, by the way). We both went to sleep around 9:30 and I didn't her a peep until 3:25 which is when she started crying very loudly.
New developments: The doc was getting concerned about Charlotte's head pain last night so she ordered a CT scan as soon as possible. At first the nurse, whose name is, I kid you not, Princess, was telling me the only CT machine available was the one in the ER so she was warning me about the sights and sounds one might experience there on a weekend night. I even fashioned a blindfold for CJ under the guise that the lights might hurt her eyes, which has actually been the case lately. At the last minute they sent us to the third foor where she had gotten them before. That was a much calmer ride. CJ slept through most of it.
Now we're waiting. What the pediatric surgeon told me was that they think her ventricals might not be working as well as hoped and they might actually have to go in again to install a shunt after all.
I'll keep you all informed as I can,
Rog

No Shunt

After a much better night of sleep, I feel like a human again.
Dr. Tye came by and told me Charlotte's CT scan looked the same as before so no shunt. That's good news.
Bad news is he thinks it could be aseptic menengitis (kind of a lining irritation after effect of the surgery). They're going to do a spinal tap today to relieve pressure.
They momentarily got CJ back on morphine while they checked to see if the Tylenol 3 was masking the fever symptoms. It wasn't.
Nurse Dana is on the edge of getting a nickname but I can't quite put my finger on what it should be.
If you're planning to visit, please be ready to either wait or not get much action out of her. She'll be sedated for the spinal tap and none knows exactly when that will be.

Spinal Tap

Spinal tap has been done, fluid was drained, pressure was released. They moved her back into the PICU for the procedure and now she's back in her room sleeping soundly. She slept through the move and most of the prep until one of the docs (I call her Dr. Raging Bull) manhandled her onto her side.
I appreciate Dr. Tye's bedside manner more and more whenever I come across someone who seems to have forgotten that the piece of meat in front of them is a person. I constantly have to weigh whether I think a docs/nurses procedure is so important that we need to disturb CJ. The night nurses are so amazing at NOT disturbing her, they have really spoiled me for the other medical professionals who are very capable and proficient at what they do but are a bit tunnel visioned on the procedure sometimes.
I'm sure they have a knickname for me.
So anyway, she woke up as they moved her onto her side and nearly panicked. Probably because she was in a new room and she was pretty sure that being on her side meant that something bad was about to happen to her. Fortunately I was there and when she saw me, she reached out with her right hand and put a death grip on my finger. She made me sing Frosty the Snowman to her and I had a flashback to the moments before her first surgery. I had some real trouble keeping it together. But it was enough for her and she settled down pretty quickly. Then the sedative was administered and she was out. Still took me a moment or two to get my finger unlatched.
After the procedure, Dr. Raging Bull tried to wake up CJ but she wasn't going for it. The doc asked her if she wanted to sleep some more and, with eyes closed, she nodded, "Yes."
For the record, the doctor who actually performed the "LP" (lumbar puncture), Dr. Czynsky, was great, overexplained everything to me, and afterward, showed me the vials of fluid that came out because he knew I like to see that kind of stuff. :-)
In a few minutes it will be 2 hours after the procedure and we're going to wake her up to see if she still has a headache. If she does, it iisn't the fault of the spinal pressure. It would be great to hear her say, "I'm hungry" and not, "My head hurts."
There was another "older" Doctor there who was teaching a couple of med students abut LPs so they'll be ready whenever someone wants to listen to some classic rock albums...uh wait...
It's pretty cool to be part of the education of the next generation of doctors.

Countdown to homecoming

Mommy's turn...
I don't have much to update on the hospital front, but on the home front we are moving right along. The house is just about ready for CJ's homecoming. We have moved the daybed from our guest room downstairs to the dining room, pushed the dining room table to one side of the room, and emptied one of the buffet cabinets. This will give us plenty of room for all her "stuff". We are planning to hang her many get-well cards and posters on the walls. I think we have secured a bed rail too.
Much thanks to Juli and Geoff Tubbs. They have a pre-made and ready to go wheelchair ramp at their disposal. Roger will be contacting them about getting it to us and I was gently reminded by our neighbor and town councilman to double-check with the city about building permit stuff (Thanks, George!). Just in case...
I expect that tomorrow will be another endless day of meeting with doctors and therapists and we are hoping that she will be ready for a transfer home on Tuesday. May take a lot of coordination but it will happen!
It was so nice to be at church today. We had boy and girl cousins baptized today. Welcome to the church family, Brown and Aliyah! The baptisms were beautiful and it was that wonderful combination of comforting and overwhelming to be "home". So nice to see everyone and get well-wishes, wise words, and hugs.
Now I'm at Romp n' Roll. Phyllis is doing some touch-up painting and I'm doing the books. Ugh...a necessary evil of business ownership, I guess. Hopefully we will get to the hospital to relieve Roger soon.
Happy V-D week.

Shrek!

Much laughing tonight as she watched Finding Nemo and Shrek. She also ate a TON more. They weighed her tonight and she came in at 15 Kilos. She weighed 13.7 when she came in the hospital! Guess that hospital food (and the choco chip cookies...) are pretty good.
They did give her a bit more morphine tonight. Supposed to help with her head pain. She was also supposed to fall asleep soon after her bath but still awake. Eyes glued to Shrek...
Hopefully we will have a peaceful night in preparation for a busy day tomorrow.
Rachel

Sleep doesn't come easily

Ok, so my child is seriously strange.
The nurses gave her medicine (including morphine) at about 8:30 (I think?) and then she had her bath. We thought, Ok, she will be asleep before we know it. Well, it's 11 PM and while she is mello-yello, she is most definitely not asleep. She did get the munchies and ate 5 more pretzel sticks and is now munching on a bowl of dry cheerios. She also keeps asking to hold new stuffed animals (she is literally holding Dora, Pooh, and her two beanie babies ALL AT ONCE!). And every once in a while she loops into random statements like, "Mommy and Daddy work at Romp n' Roll and Daddy teaches classes for me..." or "I really love my animals mommy....more cheerios?". She's hilarious! The nurses are astounded that she's still awake. My daughter, the stoner!
Meanwhile, I watched a whole episode of Desperate Housewives online and checked up on Facebook. I don't know about my doped-up child, but mama is tired.
Just remembered to turn on the Starry Night lullaby CD so maybe that will help...