Today was a day of learning. We met with the transplant team, and they explained the process and everything that goes into being listed, finding a match, and what life looks like after a transplant. There’s a lot of information for us to process, and we’ll figure it all out in time. We have a large book that has all the details from our conversation to go through.
This morning David was a bit fussy. Neuro-surgery said they still think it is fine to not have another MRI until next week. After discussing with the provider later, it is a big deal to go ahead and do neuro-surgery. So unless we physically notice his head start bulging or he has other symptoms, the MRI would provide information but there would be no action at this point.
Otherwise, David had a fairly low-key day in his room. He got his weekly echo, which he was not a fan of. Then he also got a lot more labs drawn for workup for the transplant evaluation process. He also got in so many cuddles during the day from child family, his nurse, and OT. Child family provided comfort while he got his labs drawn, and then OT and music therapy interrupted his snuggles with his nurse. Music therapy interacted with him as he got cuddles and stretches in with OT on OT’s lap.
He got more cuddles in with his nurse this afternoon, and a little playtime with our volunteer. David eventually seemed to be able to soothe himself with cuddles, but it did take him a while before he started settling. Late this afternoon, his helmet arrived. The first day will be 1 hour on, 1 hour off throughout the day and off for naps and bed time. For his first hour, he got to go for a wagon ride and then attempted snuggles. The older kids were here, and they had their own plans for the wagon rides and Anna made the cuddles difficult. Overall though, I think David’s fussiness after the wagon ride had nothing to do with his helmet and had more to do with the fact that his ride was over.
David had more bloody stools that started overnight last night. We still don’t know what is causing it. We have permission to stop his aspirin for up to 7 days. That makes everyone nervous because he needs it with his shunt. However, they have agreed to stop it for a few days to see if that helps with anything, along with stopping his feeds yet again.
Tomorrow should be another low-key day. We’re hopeful for more wagon rides, and hopefully we may finally figure out what is causing those bloody stools.
Poor little guy. Just wish he could get at least one day here and there to just be a baby. Instead of a sick baby with so many issues and pain. Him being so young and not having known anything else, might just be good at this point. Very young animals have a very short memory and so for example, the pain of removing dew claws doesn’t even register after a few minutes. Forgive me please for the comparison with David. But he only knows what he has experienced in 6 months. And, he doesn’t know what “normal”is to other people, and so doesn’t know he’s not supposed to be hurting. It’s normal for him and so he can accept more than a adult because he doesn’t know any different. Sorry for the long comment. My whole point with this is take comfort in anything that you can. David has to rely on you his parents to be on alert and you are doing a wonderful job! Love and hugs.
Great that David got his helmet. He looks cute in whatever he is wearing! I hope his adjusting to the helmet goes well as the days go by. What a trouper! After all the procedures in the past days, I’m so glad David’s had a day of being held, playing, having his therapy, listening to music, seeing the kids, and riding in his wagon again. Praying for him and his care team who are watching all the variables, and for you and Adam with all the choices and procedures ahead. So grateful God is guiding your paths through all the uncertainty. You are not alone. ❤️ May God’s love surround and comfort you in this time, and give you rest.