Grace has been sleeping a lot. It turns out that her insides don’t like being moved around too much. We have had issues with both pooping and peeing. I never knew until I became a parent how important pooping and peeing really are. I feel like I could write a book about it sometimes!
Grace has been incredibly tough, hardly a complaint. She doesn’t want to play with toys though. They have offered her some really cool ones, and we’d brought one of her favorites from home. She will watch me play with them – but won’t actually do much to play with them on her own. That is a sure sign that she is not feeling very good.
The doctor is completely willing to let Kevin and I run the show. Evidently a lot of the orders end with “per parent’s direction.” She’s on some extra meds – antibiotics, pain meds, etc. Some of it will go away when we go home, some of which we will keep on board for awhile. We are a little anxious about her comfort on the four-hour drive home since she is tiring so easily.
We had some trouble with seizures early on which isn’t unusual due to the stress she’s been under, but still hard to watch. I called the epileptologist and we’ve made a slight adjustment in meds – just temporary- to try and get her some relief. The seizures pull on the incisions and that has to hurt. The extra med – plus I’m sure rest has helped the seizures calm down.
We have had Graham with us these two days. I was worried about how he would do, but he’s done pretty well. He checked out the sibling play area for a while and was able to hang out with some other kids. My friend Megan and her daughter came for a visit, Graham and she made tents out of the curtains in Grace’s room and sat together in a big rocker watching Disney Jr. and playing apps on phones. He’s enjoyed the pool at the hotel. Kevin has taken him out and about to see a few things around the city.
He takes very seriously the necessary hand washing and hand sanitizer necessary when someone is in the hospital. He has gently approached Grace and gets up on a chair to pat her leg and check on her. The doctor’s and nurses have been great with him. He is always recognized as a member of the team – but also they have asked him questions about what he likes. The walkway into the main part of the hospital is decorated with stars and you can use your hands to have them make music. He loves this – and all the other touches that let you know you are in a children’s hospital. With him, I’ve had the chance to get outside a little. We have sat together in the family area and read books.
He loves Minnesota. I’m not exactly sure how he defines it in his head – but he’s told me a few times in these last few days that he wishes we could be in Minnesota more.
He’s headed to my mom and dad’s today so he can just be a kid and we can give Grace our full attention as we prepare to bring her home. They think maybe we’ll be discharged Tuesday. We are just going to take it one day at a time.
Thank you for checking in on us.