7.23.21 Inpatient 27

Not much to report here. Aimee’s team is making a couple of changes, increasing the medication to quadruple the dose and attempting to increase water. They were hoping to decrease valium again tomorrow, but today we had to use a rescue dose. Aimee was having a lot of muscle spasms and a high heart rate. They are concerned that the valium may be adding to the respiratory suppression and causing more sleepiness, but in order to have her awake and engaged, she needs to be comfortable. Such a balancing act. The ostomy output is unchanged. The lung function labs are much better after using the bipap for the extended time. 

This is all so long and so slow and so discouraging. GI is still suggesting a formula change. We are still holding out, but at some point here we will probably compromise at returning her to the original form of Liquid Hope formula that she was on a year ago. We had changed her to a semi-elemental formula that is very calorie dense. The specialists are concerned that it may be keeping her from absorbing water. If we don’t see improvement from this weekend’s changes, that will be the next move most likely. :( If we get to that, I am really praying that it works. It would be very difficult for us to move her to a sugar based formula, which they have been recommending. 

Mostly this is my view here between all the medical staff visits and the cares for Aimee. A sleeping girl.