After a very tough week we are finally home. We have a TON of appointments we have to coordinate over the next couple of weeks. Casey was finally able to get some food down and her pain under control (and no more bleeding) enough for them to let us fight the rest of the battle from home.
In order for Casey to eat we are having to keep her pretty heavily drugged. One of the many new drugs we are giving her is supposed to help some of her stomach and related issues heal as much as possible. The rest of the drugs are to manage pain. We hope that the healing drug will start to show some progress soon. The idea is that as it heals we should be able to slowly back off on the pain meds. Casey also had to come home on a little oxygen, but we hope her lungs should be ok without that soon.
While we are working on Casey getting stronger, we will be scheduling follow-ups with most of her doctors. We have to work with her medical team to determine what steps to perform next. We know there could be significant surgery in the near future. We are guessing it would be done before the end of the year. We just have to weigh all of the benefits and risks with her doctors to determine the best approach and timing. Once Casey is strong enough, we could be headed back, probably for a much longer stay in the hospital.
No one likes to be in the hospital, but Dell Children’s does a really good job. There were a few hiccups through out the week. Overall the stay went as smooth as possible and the doctors, nurses, etc were all great.
This next week is going to be tough. We are still trying to find then will have to train a new nurse. Also we have to completely redo Casey’s feeding and medicine schedule to fit in all of the changes. Some of the drugs require us to stops feeds for 2 hours. We also have to make a lot of calls and coordinate a lot of appointments. Regardless of how tough this week will be, I am sure it will be better than last. At least we are home now. I don’t know who is happier to be back out of the three of us.
We will keep everyone posted as Casey continues to recover and we make progress in the steps. Thank you again for everyone’s thoughts and prayers this week. We still need them so please keep them coming.