Casey had a full day. We things started bright and early. Around 3:AM when Casey finished up a round of bipap and then we got a new weight on her. She was really angry about being woke up for a weight, but I am glad we got one. She hit 31 pounds back in 2009, but then lost weight and came home at only 28 pounds. It took us about a year to get to 29 then another to get to 30. We have been hanging out at 30 pounds for a very long time. We are very excited to tell you all that Casey is 32 pounds and 4 ounces. Some of that is likely fluid from IVs, but this is a really big deal.
Casey went back to sleep for a little over an hour and then we had to wake her again (even more mad this time) for her morning xray. Just like all of the other xrays from the past week, a tiny bit better but not much.
Each IPV session has been getting harder and harder on Casey. She is no longer clearing stuff out at all, and instead is getting very agitated, high heart rate, and not able to catch her breath. This can last hours. It seems as though right when she would finally cough and calm down that we would have to get the next round started. We talked with her doctors and have come up with a new plan. The IPV is out, and now she is doing as much bipap as she can tolerate. The goal is to go 4-6 hours on then 1-2 hours off. This is hard on her, not as hard as IPV, but hard. We will get her through as much as we can tonight and see how things look in the morning (fingers crossed).
Casey got up in her chair some more this morning and was able to do some PT and music therapy. She was still really worked up from the previous IPV, but at least she is getting started. They are both going to come by 2-3 times a week while we are here. Hopefully she will enjoy the next visits more.
I am hoping for some good news on tomorrow’s xray. Thank you again for the continues thoughts and prayers.