Reece received a boatload of platelets last Tuesday and wasn’t in clinic until Friday. The doctor thought perhaps he was beginning to make some of his own platelets. On Friday morning, I passed by Reece sleeping in his bed and noticed that he had blood all over his face and pillow. He had a nose bleed like I have never seen before (in fact, his first since this whole process began). When we arrived at clinic, we found out that his platelets were even lower than normal. So–no–he is not making his own platelets yet. We continue to strive for the impossible, which is not spending our entire week in clinic. It’s hard to describe why this is the case other than a platelet transfusion alone takes normally 3-4 hours, start to finish. Since he needs so many, he gets at least three transfusions a week. If he needs red blood cells, that adds two more hours. Add on any other appointments or clinic needs and 3/4 of the day gone. We are trying to only be there Mon/Tues/Fri, but even this week we are going back today to meet with Cardiology as a follow-up to a heart abnormality that he had during his hospital stay. I’m not sure why this couldn’t have happened while we were still in the hospital, but it is what it is at this point. So, we are trekking back over the U of MN this afternoon to get his heart checked out. I am hoping it all looks good. His heart, as compared to all other major organs in his body, has been the least concerning.
As far as Reece is concerned, he is still about the same as he was last week. I got to Monday afternoon and started to get so frustrated with the long weekend of constant warm blankets and lying around and had a bit of a mental breakdown. So we have some new strategies to try to get Reece off of his warm blanket addiction. We are using “blanket dollars” that were created by the Child Life crew at the U of MN so that he only has so many warm blankets he can use in a day. While that is a decent strategy, I finally told Reece that we are going to use regular blankets other than at night and he can use his warm pack (microwavable) underneath his blanket during the day if he is still chilly. Because he is using these blankets all day, I am sure that room temperature air does seem cold. Additionally, the doctor is having a tough time discerning if all of his redness is from his GVHD or if it is partially due to the constant heat on his skin. Truthfully, when he gets up to do anything, he is almost sweaty underneath all the blankets, so it is likely making his skin appear even more red than it really is. Apparently, it is somewhat normal for kids to adopt a comfort measure from the hospital and take it home with them. There is a girl in clinic about Reece’s age who carries around a bag full of ice, since she was used to eating ice chips in the hospital. Unfortunately, Reece’s comfort measure prevents him from getting up and moving around, so it needs to be managed and ultimately removed. And I thought getting rid of thumb-sucking would be my challenge with Reece!
The gloves finally came off on Monday night and I decided to check out prognosis numbers. All I can say about it is that I was ready for it. Every time I woke up to nurse the baby, I thought about the numbers. And then on Tuesday, I stopped thinking about them. I’m glad that I didn’t learn about them when we first found out his diagnosis. But learning about them at this point in the process made sense to me. I am no longer naive and we have experienced enough. It felt weird to not know that part. It is what it is.