We had a very long night last night. Ethan never sleeps in the hospital, so he was up about every 20 minutes crying, trying to get comfortable, and expressing how scared he was. Unfortunately the little ledge that they have where the parent "sleeps" is behind the patient bed. Because of this layout he wasn't able to see me. I kept having to sit next to his bed until he fell asleep, then sneak over to my "bed" to sleep until he woke up and noticed I was gone. This usually lasted about 15-20 minutes at a time. :( This morning he was exhausted and cranky. He was done with the hospital by this point and in quite a bit of pain. We battled small fevers yesterday and today, but Tylenol seemed to take care of these each time they popped up.
We had a few visitors come in to see us. It was so great to see everyone during this trip, so thanks so much to those who were able to come and visit, come and pray, and just stop by to take my mind off things! It was also great to see our old docs and nurses that we haven't seen in a while. We don't end up in PICU every time, so we tend to go spans of time between seeing some of our buddies. I even was able to meet up with one of Callie's school friend's mom who works there in PICU. And Dr. Zahka brought in another batch of cookies for us today. :) He had hives and just took some Benadryl so he didn't stay too long, but it was still really great to see him.
Ethan finally got out of bed late this morning. We made a very slow and unsteady walk to the fish tank at the end of the hall. There we saw Dr. Golden (our amazing cath doctor) and stopped for a photo and chat. :) He was surprised and not that pleased with how "out of it" Ethan still was. He had a lot of meds and apparently it was still in his system. He seemed dizzy and extremely unsteady. He basically just wobbled, and tilted, and had to be helped to walk slowly and not fall over. By the end of our first walk he improved a little bit so that gave me hope that he would continue to get stronger through the day with practice.
After that trip we decided to head down to the playroom. Once Ethan realized he was allowed out of bed, the last place he wanted to be was back in his room! We headed downstairs (in a wheelchair this time) to visit with the security guards, check out the fishtanks, and play in the playroom. By the end of his playroom visit he was definitely improving with his stability (even though he was still pretty crazy unsteady).
We had to head back to the room since PICU didn't want us gone long away from their monitoring. Since he wasn't happy with that I surprised him with a Lego kit we picked up for his surgery. Thankfully it did the trick for a while, cheered him up, and kept him occupied for a while. :)
We waited on wound care since morning. We needed them to come and inspect the sore on his butt. When they checked him out they realized it was actually a chemical burn - not a pressure wound. They think this was caused by the betadyne or whatever antiseptic solution they used during surgery pooling underneath him on the cath table. He lays on a heated air pad, so the heat under him basically cooked the solution and caused a chemical burn on him. :( He also has one on his ear, but that doesn't seem to bother him that much. The burn on his butt is causing him a lot of pain though! It seems to be the only thing that is hurting him. We're just going to have to keep putting an aloe cream on it twice a day to get it to heal. We'll see wound care again during our cardiology appointment next week.
He'll probably kill me someday for posting his butt on the internet, but here you can see the burn he has. It is so tender, but hopefully with enough cream he'll be feeling better soon.
We got news that we would be moved to the regular floor (one step closer to going home). We had to wait for a room to open up which took a few hours, but finally made our way over to the other room. Once we got there and settled into bed we were sent downstairs to radiology for an ultrasound of his neck. They wanted to make sure there was no bleeding that we couldn't just see by looking at him. Thankfully the preliminary results came back showing no bleeding, so we were told we could leave! YAY!
We had to resume Lovenox injections (much to our dismay) tonight. He'll do this twice a day again until Saturday. Saturday he'll have a blood draw at the lab to check his INR. If his INR shows a high enough level then we can stop and only continue on his aspirin and coumadin. If it's not high enough by then, we'll have to continue the shots on top of the other 2 meds until we get a good lab test. :( Hopefully Saturday's tests will let us stop the shots!
We're having to keep an extremely close eye on him since he's still very unsteady and we need to make sure there are no more bleeding issues. They're concerned about that obviously, and we need to make sure there's absolutely nothing causing his neck to bleed again. Please continue to pray for his healing and safety. Thank you all so much for all of your support and prayers. It means so much to us and we appreciate it so much!
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