Here are a few pictures from the last few days. The first is Ryan getting off the unit in the wagon. It was tricky to pull his IV and the wagon at the same time, but I figured it out. He loved every minute. The second is Ryan and me watching the world go by outside. And the third of course is the older kids visiting.
Travis and I switched places today so I am now home waiting for the older kids to come home from school and he is doing hospital duty with Ryan. It will be so good to see the older kids since I have had absolutely no time with them for nearly two weeks. That’s been hard but it was also very hard to leave Travis and Ryan in the hospital. I will go back up on Saturday with the older kids probably in the afternoon when Sidney’s volleyball tournament is done. We are hoping he will get to come home in the next 2-4 days if he continues to improve as he has but don’t want to push him to leave too soon. He is still getting TPN through the PICC line and is now on full formula through the feeding tube. The hope is that he will continue to tolerate the formula in his stomach so we can maybe get him off the TPN tomorrow. Then we have to work on him eating normal food, getting him switched from the feeding pump 24 hrs a day over to three bolus feedings and of course we need him to poop. So far there is no indication that his large intestine is working yet so we really need that to wake up. His seizures were really bad this morning and we had to supplement his meds with a big dose of IV Ativan which knocked him out but it stopped the seizures. As of today he is back on all his normal seizure meds plus another one we had to add to the list so that makes five seizures meds every day. He is in good spirits which is great and no pain that we can tell. Travis will be in the hospital with him through Saturday afternoon so if you want to go visit him, I know he’d appreciate some company. I don’t think people understand how lonely it is to sit in a hospital room 24 hrs a day all by yourself watching your child and praying they get better. He’s had a really rough week so any encouragement you can give him would be greatly appreciated. I’m sure he won’t like me saying that, but it’s true. We all need to know there are people out there who love us and care. I miss those boys already and can’t wait to get our family all back together again. Being away from the hospital and back home for the first time since last Friday, reality has really hit me and it’s tough to keep my head up and remember God is in control and the events of this week are all happening for a reason. Sitting in the hospital for a week doesn’t really feel like real life but now that I’m home, it’s a different story. And I didn’t realize how tired I am too. We’ll get through this, we always do, but I’m hoping God shows us some mercy soon.