Casey has been pretty busy. She has had 3 procedures in the past 3 days (PIC on Wed, Upper GI Thur, and her GJ placed yesterday morning). All 3 were hard on her. She did great though. Tim had to step out but they let me stay with her for the GJ. It took a while. She stayed really calm the entire time. There was a little bit at the end where she started to get worked up. I did not realize it then, but soon found out it was poop not the procedure.
Since we were gone in the morning to get her procedure done her daily chest xray ended up being really late yesterday. It was so late that the doctors never even came by to talk about it. We did track down someone that took a look for us. It was pretty much the same as Thursday. We were hoping it was going to be more like Wednesday’s improved image. This morning they came by and took an image around 5AM. Again, it looks pretty much the same.
We are spending the weekend just focusing on breathing treatments and respiratory interventions. Hopefully we can see an improved lung by Monday. Until then they are not rushing the CT scan.
We were expect the CT to be done on Monday. This would have given us 2 days to get GI and Surgery together to talk about the findings. However if they put it off until later next week we may have to wait until after the holiday weekend to really talk about it. Casey would get more recovery/rest time so maybe the test would end up going better that way. I don’t know. Part of me really just wants answers. The other part does not- the part that knows there are some serious decisions that come after.
Casey is resting right now. She had a pretty tough morning. Something was bothering her. We have no idea what it was. She started feeding (very slowly) in her J port last night. It’s possible some of this mornings issues were related to digestion. It could have been pulmonary pain too. So hard to know.
Sanjoy and John came by to see how she is doing. They brought us lunch too (yum!). We have been so burnt out on take out and the cafeteria here. We were so excited to see home cooked food. Thanks John & Sanjoy (and Aruna who had to stay home sick).
The next couple of days we may not have much to post. As we make progress on her lung and get closer to the CT we will let everyone know. She may start getting a little non-aggressive bedside PT and OT today or Monday too. It will be nice for her a little range of motion and stretching in.