It was definitely not the birthday weekend that I had envisioned when we were admitted to the hospital. We had all thought he would be home and feeling much better than he actually did. Still, Reece did have a Lego-themed birthday cake and party, including singing and presents from the nurses and doctors, and many well-wishers. He was battling a fever all day on Saturday, but held his own despite not feeling his best. He had many smiles throughout the day and that was enough to make my day. Yesterday he fared a little better temperature-wise. He still was lower in energy. It was hard to watch him have his birthday in the hospital; he deserves to be having fun, doing 5-year-old things. We need to get him out of here. It’s hard for me to post pictures of Reece right now, because I feel so protective of him. But I am posting a picture of him with his cake. You can’t tell by his face so much in the picture, but he thought is was pretty cool. We never did cut into it, as he didn’t feel up to eating it. When we get home, we will do another big party and a bigger cake and lots of goodies.
Just so you know, Reece’s hair is growing back, but one of the drugs he is on to suppress his immune system (in order to avoid GVHD–all allogeneic BMT patients receive this drug) makes the kids grow hair all over their bodies and especially thick hair on their faces. These little guys have unibrows and sometimes mustaches and other facial hair. When he is off of that particular drug, the hair that is not normally thick on his face and body will fall out, leaving his regular amount of hair behind. His face is puffy due to the steroids he has been on for GVHD and the hemorrhage. They are starting the steroid taper tomorrow and it will last for about 10 weeks, assuming his rash doesn’t flare up. He will get back to looking like his normal self. He is a cutie despite all the weird side effects of the drugs.
I have several different posts running through my mind–things that are probably worth writing about, but I haven’t been able to pull them all together mentally to make them sound coherent. I can, however, sum up how I am feeling in four short words–I am freaking out. I am 34 weeks along as of yesterday. I would be shocked if I went to my due date; it could happen, but it’s not likely. That gives us about a month until the baby is born. I can not fathom what it would be like to give birth while Reece is still hospitalized or how we would manage a child in the hospital, a busy two-year, and a newborn.
I see our best case scenario for Reece’s discharge being two weeks out. No one at the hospital is even to the point of mentioning it, so things would really need to come together. His lungs need to repair, he needs to be fever-free, and he needs to take his meds orally. This also assumes that he doesn’t catch any further illnesses. If anything else comes up, it means more time in the hospital. This whole scenario is getting exhausting to watch and live through. I can not envision our lives ever getting back to normal. I have had some distinct feelings about things turning around. I’m not going to weigh in on what that will look like, but my gut feelings have been pretty accurate all along. I have a gut feeling that we will be going home sooner rather than later. The only reason I am putting that out there is that I feel like this today, right now, this moment.
As I was getting ready this morning, a verse came to mind from 2 Timothy 1:7, “God doesn’t want us to be shy with his gifts, but bold and loving and sensible.” I had only ever considered this verse with spiritual gifts and didn’t apply it to what I consider some of my most precious gifts in life–my kids. This is what I plan on focusing on for the next several months in an effort to keep persevering. Otherwise, my crisis tendency is to bury my head in the sand like an ostrich. That isn’t an option–it only ignores the problem while isolating my kids and family. My kids–all of them–need me to be these three things. I have a good start on the loving part, but the bold and sensible–that’s going to take some real effort. The only thing I feel I can control is how I handle what is given to me, so this is where I am starting. No more freaking out over beeps in the hospital room or “what-ifs”. Those mentalities are, among other things, defeating and draining places to live. I’ve been doing that for nearly three weeks and I can’t do it any longer. I do, however, still have a fair amount of concern about Reece’s recovery, getting Britta back to Minneapolis and settled, and integrating a new baby into the family. I’m only human and I’m a Type A human at that.
- Reece’s fevers to subside and infections to resolve; protection from further infections
- Reece to wean off of BiPAP and high flow oxygen; normal breathing to resume
- Return in energy and continued increase in desire to play and do normal 5-year-old activities
- Improvements in all things BMT
- Discharge prior to birth of baby
- Resolution for our family in bringing us back under one roof
- Comfort and peace of mind for our family
- Trust in God’s Master Plan
- Remission and life for Reece