We are still inpatient at St. Jude waiting for Caleb to feel better and for his counts to recover a little bit before we can go home. There were really no major developments today. He looked like he was feeling better this morning, but then started to feel worse. Basically his temp rises and drops, rises and drops, as his body tries to fight off whatever is making him feel bad. You can visibly see how different he feels when his temp lowers versus when it is higher. When it’s high all he wants to do is watch movies and sleep.
His temperature has been hovering at or just below 38 degrees Celsius, which is about 99.3 to 100.4 F. They only consider anything above 38.3 C, or 100.9 a true fever that requires additional blood cultures and would allow him to have Tylenol. He’s been just below that all day. So they don’t want to give him Tylenol because that could mask a true problem. But you can see how flushed his cheeks look in this picture.
The other thing aside from his temperature that is important are his blood counts. We are going to be here until his ANC count recovers a little. It is currently 0, and they would like it to be over 200 before we go home. This number indicates how well he can fight off infections. He is safer being in the hospital than at home when his number is so low.
So, we are just sitting and waiting to see what happens. It is very hard to watch him sleep all day and not feel well. I just keep praying that I could take away his pain and discomfort. It’s very hard to not be able to do anything for him. We just try to comfort him the best we can. Earlier when I was laying with him he kept waking up every so often and reaching for my hand. Every time a nurse comes in and he’s scared he wants to hold my hand. Tonight he looked up at me and said “don’t let go!” He’s just so sweet and doesn’t deserve any of this. I’m praying he’ll have more energy and be more back to himself tomorrow!