Friday, February 11, 2011

Post G-tube Update

The plan:
Go into the hospital Monday morning. Julia have surgery to have the g-tube put into her stomach. Recovery for a day. Try out the tube Tuesday and Wednesday. Come home Wednesday.

The reality:
Julia has been in more pain and for longer than was expected. Fevers and unexpected low blood counts caused us to need to remain in the hospital. The tube works properly and Julia is slowly getting used to it. She remains quite apprehensive about anyone getting near it (because bumping it a little still causes pain) but she's able to clean around it with a q-tip now - we'll take the baby steps when they're offered.

The tube has allowed her to start getting 12 hours of extra feeding at night. The amount has been adjusted a little each day because sometimes it makes her feel funny. What she "eats" through the tube is a vitamin and fiber fortified baby formula-type of liquid. She'll still be expected to eat during the day and we can be flexible with the nighttime feedings. The fact that she can eat normally is very nice because it allows for that flexibility. Once Julia goes back to school and is up at 6:00am, it won't really be feasible to start a 12 hour feeding at 6:00pm when we may not have even finished supper. Besides the extra calories, Julia has already heavily utilized getting liquid meds in the tube. That's a huge relief for a kid (and her parents!) who refused any oral meds.

So the point we're at now is that Julia's fever's been gone for over 48 hours and the pain comes and goes. She's been constipated for days and that is slowly working its way through with the help of three meds. Her blood counts are still low, but not low enough where they wouldn't send us home. On that front, it sounds like we will be going home today.

While at the hospital, we find ourselves making little updates frequently via Facebook because we don't get the time for a more detailed report here on the blog. It's just easier that way for us and still gets some info out to some people. If you're on Facebook and not already friends with one or both of us, feel free to send a friend request to Amanda or me.