I haven’t posted since Thursday and a lot has transpired since then. I am pleased to say that most of it has been positive. Reece, in general, seems to be doing better. He is responding well to the steroids as far as his skin is concerned. Of course, he is still on insulin, but we have moved him to IV insulin for the time being. After a major bruise from his first couple of pokes, several discussions with the BMT docs, me booting the endocrinologist out of the room (no regrets on that one), and a better handle on his insulin needs, we at least have a better plan. It turns out Reece has a pretty high tolerance for insulin, which makes his dose pretty high; he will likely need to be on it for longer than we had hoped.
Reece’s body has been pretty wacked out from the steroids. Not only has the blood glucose level been an issue, but he has his days and nights all messed up. He has restlessly slept for a couple of days in a row. Last night they finally started him on a new med to help try to even things out. It must have done something, because he has been sleeping for almost 24 hours. He wakes up to use the bathroom and take meds, but other than that, he is out. At this point, they feel he is just making up for lost sleep.
Reece has been weaning off his IV meds and transitioning to more oral medications. They are beginning to prep him for returning home, although they aren’t committing to a particular date. His temp has been normal for several days, but it is starting to creep back up–perhaps a side effect of taking him off two IV antibiotics. Who knows. I think Terry and I will be doing education classes this week to learn how to administer insulin, change the dressings, tape dressings for bathing, and other need-to-know items for going home. Don’t get too hyped up yet–anything can happen. That’s not me being pessimistic, that’s me being real. And once we are discharged, they told us to plan on being readmitted shortly after, as usually a temp is spiked or something arises shortly thereafter, landing you back in the hospital for several days. Yes, our journey has only just begun.
We have been doing more wagon rides and walking in the halls. Reece doesn’t particularly love the wagon rides, but he is doing them. Britta visited this weekend, as did Uncle Tim. It was good for Reece to see both of them and he was happy that they came. Britta actually took a wagon ride with Reece, which was, of course, adorable. Reece was able to shoot Tim and Grandpa Mark with his Nerf gun, so that brought on big smiles! So much for my “No Guns Allowed” rule.
I plan on working diligently this week to get more of the house in order…sanitizing toys, cleaning my fridge, organizing closets, washing bed linens. This nicely compliments my need to nest, being 31 weeks pregnant and all. I think it is strange, speaking of pregnancy, that Reece’s Day +100 (a milestone for a BMT transplant) and his steroids coming to an end correspond with my due date. Also, the 6-month mark from the day of his transplant (another major BMT milestone) happens to be our wedding anniversary. It matters, because it pulls us back into normal life and it gives me a different perspective on time. Day +100 seems far off to me, but my due date seems like it is just around the corner. They are almost one in the same.
We have had a great nurse over the weekend who just returned from maternity leave, so she is new to us. I was asking her questions about Reece’s physical changes due to the steroids and some of the other immunosuppressive drugs he is on. She shared that she also had to be on steroids in high school and how she can relate to these little ones as they go through the physical changes. She could also answer my questions from direct experience. She shared parts of her own experience and how it shaped her desire to become a nurse. What a blessing she is to us to be caring for Reece and to be able to relate to many of the things he is going through. I can only imagine that Reece’s experience will shape him in certain ways that would not have otherwise occured, as well.