Well it was another big day for Nica. She had a great nights sleep last night after they disconnected her IV on a trial basis. She woke up closer to her regular time and it looks like she actually be getting back to her normal sleep schedule. She got to play with Anne and sit with Grandma Joyce for the fist time today. She still has some minor seepage from her back but 2 doctors have assured us that it is normal but that they’ll continue to keep an eye on it. I’m still amazed that they’ve never put a bandage over back. It goes against everything you hear about large wounds. That Dermabond must be really great stuff.
Today Nica wanted to try eating in her wheelchair again. We tried it yesterday, and as soon as we put her in it she started crying and saying “Owey, owey, it burns, it burns. So her suggested that for today we could give her one of her Tylenol with Codine doses, wait 40 minutes and then try to put her back in her wheelchair. We hadn’t given her any Codine today but she wanted to eat in her chair so we figured we’d give it one more try. She went in it fine and started wheeling herself around her room. Anne really wanted to go to they play room down the hall and since Nica was tolerating her chair we decided to make an outing of it. It was Nica first real foray out of her room and she kept wanting to push herself to the play room but she still had the shunt in her dominant left hand. After about an hour of play it was time to head back. We noticed that some blood had collected in the shunt tubing as a result of her using the hand so much. We told her Nurse, it was Cathy today, about the redness, swelling, and blood. She tried to flush the lines clear but they were clogged. Cathy removed the shunt and called the doctor who said since she was drinking and doing so well that she didn’t need a new shunt or any more IV. That made Nica’s day as she got her good hand back.
For dinner Nica had some chicken nuggets and a big bowl of mashed potatoes. She fed herself the entire bowl of potatoes and did it using a regular cheap plastic spoon. Her wrist are still curling in a bit when she uses her hands a lot but Dr Rodriguez says that everything will continue to improve. Especially once she begins her PT. After his rounds this morning Dr Rodriguez said he would contact the rehab team and get her to TGH hopefully early this week.
The entire staff at All Children’s has been amazing. They’ve all really taken to Nica. She’s been in such a good mood. She wants to have tea parties with every one. She has all her stuff animals and friends plus we’ve been listening to a lot of Disney songs and soundtracks. The nurses have started calling our room the fun room and they often come in in groups just to hang out for minute and meet Nica while one them takes her vitals. What a great experience it’s turned out to be all around. It makes nervous about moving to TGH where we’ll be spending a lot more time. I hope they live up to the same standards as ACH. I guess we’ll find out soon. It’s gonna be even tougher considering that Tammy and Anne have had to go back home for the week for work and school. I’ll have my mom with me until Nica is transferred and then she’ll be leaving to go stay with Tammy to hopefully help alleviate some the stress and anxiety I know she’s going through.
Oh I almost forgot. Nica fell asleep during her meal and while holding a piece of buttered bread. She would not let that thing go for anything. We tried a few times to get it away from her but should refused to let go, even in her sleep. Needless to say, it required a photo.
Cooking With Nica-video
