We have been home for a little over a week now and things are slowly improving. This is pretty normal for Casey. She can go downhill really fast, but the climb back up is always a long one.
Casey has still not found her voice. She is trying to make some sounds, and there have been occasional little squeaks here and there. Last night she got her weekly treat (3 Pony episodes in bed) and she tried to sing one of the songs.
We have been trying to ween her off of oxygen. We started by going down on the flow and over the past few days we have gone an hour here and there without her hooked up. Each time she would do okay, but would get tired and need it back pretty soon. Each day we are going a little longer. Hopefully in the next week we will be able to take her off all together.
Casey is still on bipap at night. She has been coming off earlier and earlier though (by her choice). In the past when she has needed bipap she lets us know when she is done with it. Hopefully we can pack it back up in the next week or 2 as well.
The new J tube site started out so beautiful. It ended up getting stressed and now we are dealing with a lot of leaking issues. We were not expecting to have issues like this so early on. Luckily, one thing we have a lot of experience in is leaking feeding tubes. It is pretty bad, but no where near as bad as the G tube was. The good part of the G tube leaking was that we could take it out from time to time to try to tighten up the site. The J tube is still a new site and we can not take it out without the risk of not getting it back in (very scary). After 6 weeks we can take it out, but not for long. Until then we just have to be creative with taping and bandaging options.
We are slowly working on advancing Casey’s food rate. She is on a low rate right now that means she has to eat 24/7. If we can get to a higher rate we will be able to turn her off some and let her have a break. That will help with the leak some as well.
Since getting home we have been pretty busy with follow up appointments. This week is full of follow ups as well as the next. Hopefully by mid-May we will be able to get back to our usual schedule and off all of the additional equipment.
Our goal for this week is to work on finding Casey’s voice, getting off oxygen, getting off bipap, and advancing the feed rate.
Thanks again to everyone for the continued support. Casey is a tough kid and has been through so much. Having a wonderful support system like you all makes a big difference.