ChloeWatts.com

Saturday, early 12-19-09

So, we’re back in PICU. Yesterday was pretty good. Last night wasn’t so good. Today wasn’t too bad. This afternoon it was a fight to keep her O2 up and her CO2 down. This evening went down hill quickly so the decision was to get her back to PICU and get her some assistance for her breathing… she’s back on the vent for the night.

Some who have seen her briefly think she’s doing great because she looks so good. However, if you follow her stats for any period of time you can see there are a lot of valleys during the day.

After looking at her chest x-ray I can see why we’re back here. Her right lung is at about 50% capacity for air. It’s pretty cloudy. The lung doctor made the decision to bring her back here. He said it’s always hoped that we can get the kids off the ventilator and have them stay off. However, most are able to take a big breath or cough in order to clear things out. Chloe can’t do that. Other post surgery problems are correcting first it appears and the serious parts are taking their time. We are fully committed to the fact that the vocal cords and everything else that is needed for speaking, eating, breathing, swallowing and such, will return to their pre-surgery condition. She sees a food ad on TV and lights up like, as Dana says, like she just got a new puppy.

The earlier part of the day had some good parts to it. Chloe did get to go on her shopping trip with the Make-a-Wish people. She was able to sit on the side of her bed with only two people helping her. She held her head up mostly by herself. This was eight minutes today.

Later in the evening I brought Colin over to see his sister. We both masked up because of him getting over a cold and me being paranoid. I know I’m not sick but this dry air in the hospital and the hot air heat in my house make me feel like I need the mask. When I’m outside I’m just fine but with the feeling I get in the hospital there is no way I would bend over her to hold her hand or try and read her lips without a mask.

Colin was very good about his mask. He played with it the entire time he was in the room but kept it in place. The only time he took it off was when he put a surgical glove over his head and blew it up. He looked like a cross between Jack of Jack in a Box and a rooster. Quite the picture.

One huge problem for us tonight was the move from the room to the PICU. Everyone who came to visit brought gifts and other things. Everything was wonderful and we so appreciate everyone who cares enough to do that for us. However, we have a good chance of bouncing back and forth, so we are going to have to keep ourselves lean and mean. Both our cars are packed and we still have too much stuff. It’s a hard paragraph to write but it’s a need and we keep having to answer the question, “what do you need.”

It’s 1:53 am and Chloe is resting well. The extra help was exactly what we needed for her. It was discouraging to have to move back but we know it was the right decision. The lung doctor even said he was a little sad that she didn’t do extremely well the first time out of here. But, he feels confident that she’ll be off the vent soon and back on the floor. Even Dr. Dorsen was amazed she was moved so soon after so many complications.

Tomorrow is another day… or rather… today is another day. They tend to meld into one and other when you spend so many hours here. I still don’t know how Dana does it. I KNOW why… I just don’t remember how…

Be well,
Ron