Fearfully and Wonderfully Made: Ups and Downs of ICU

Today started out pretty rough, but has ended on a good note. This morning, Ava spiked a fever of 102.6. She was very agitated and was shaking all over (looked like a Parkinson's shake). We tried all different things to get her to calm down and get the fever down, but they ended up having to give her a sedative. She settled down and eventually took a loooooong nap. Her temperature returned to normal and we've been able to manage it since. Ava has had a fluctuating temperature since surgery and the doctors have not been able to find a cause. The past couple of days we've been trying to manage it with a cooling blanket that blows air all over her body and with cold cloths. She has had so many medications pumped through her that the doctors are really trying to avoid giving her things, even Tylenol.

She continues to have a pneumothorax that is being monitored. If it doesn't resolve, they will have to insert a chest tube or extract the air with a needle. We are hoping to avoid this, obviously. She is off most of her medications, which is a great step. She is still taking a diuretic, antibiotics, and vitamins.

After waking up from her long nap, she has been very responsive and has been using her hands. Up until now, her right arm has moved around some without purpose and her left arm hasn't moved much at all. Tonight, I am thrilled to say, she started reaching for her toys and grabbing on to them!! She's still very weak, but I am seeing progress neurologically. I got her out of the bed and held her for a while tonight and she even grabbed my hair. Those of you who know Ava well know how much she likes to grab hair! I've been anxiously waiting for that moment because it's a behavior that is so characteristic of Ava.

The plan is for her to have a modified barium swallow study in the morning, but you kinda have to believe it when you see it around here. It's been put off three times already because of her pneumothorax. They've stopped her tube feeds tonight so hopefully it won't be for nothing. I have a feeling neither of us will get much sleep tonight! Sister does not appreciate an empty tummy. They will also consider a procedure for the pneumothorax, but again, the plan changes constantly.

And now for some pics!