01 Jun Tuesday
There was an all-out conference in our hospital room this morning with at least 10 members of the transplant team and other doctors all meeting with us at once (which highly agitated an already wired Keegan, who promptly fell asleep the minute they were gone…at 11:30am in the morning). Lots of stuff was discussed – planning, theories, treatments, etc. I will try to go into more detail tomorrow as a little more of it gets set into place. It looks like Keegan will go to the cath lab on Friday and hopefully to surgery for a new central line next Monday, which is Audrey’s birthday. Then, we would theoretically be able to start the steroid pulse, monitor him for a few days, and be home for her birthday party. That is still our goal, and I think the team is on board with trying to make it happen.
Other than a very early nap, Keegan seemed to do pretty well today. They took him off of isolation. He went to the playroom for about 20-30 minutes in the early afternoon, which just about wiped him completely out for the rest of the day. You could tell he wanted to play but was struggling. His heartrate was in the high 160s/170 while he was walking around. Whew! Maybe a little much for the first day out of bed, but he it was worth it to see him have some fun.
No improvement on the GI side, but we started his very, very minimal tube feeds up again. He has been afebrile for 48 hours off the IV tylenol and 24 hours off the antibiotics. We are praying he stays that way, too. No improvement at all on the bone marrow side, a little worse in fact. If it doesn’t improve drastically over the next two days, Keegan will get another blood transfusion before the cath. We will have a consult with the wound care team tomorrow because one of his incisions in his chest does not look like it’s healing as well as would be expected (perhaps from his bone marrow/platelet issues). They have ordered it to be treated with a betadine bath twice a day for now, which is oh-so-fun. He still freaks if you so much as lift his shirt, and every time we have tried to take his blood pressure on that arm today, he has had an absolute cow. It has me worried. Praying it’s just sensitive for now….
I will update more about “The Plan” tomorrow. We were very, very impressed to see so many people gathering to work diligently for answers for our Bug today. Even if there are a lot of questions left, I am confident our team has not stopped looking for the answers. Such a huge weight off our shoulders.
Thank you again for your prayers. I can see that God hears them and answers them when I watch my little fighter do something like go to the playroom for a bit…so huge for him but otherwise normal for another kid his age. He is our miracle, and we are continually blessed by your love for him. Thanks again.
