We are still in the hospital waiting for Caleb’s counts to come up. His body is fighting so hard and you can tell. He hasn’t had any more fevers, but he is wiped out, and so far his low counts aren’t budging.
Over the last few days Caleb has done very little. He mostly sleeps or watches his iPad or watches movies on the TV. A couple times he has asked to sit up and play legos or play with play-doh but after about 10-15 minutes of that he’s exhausted and wants to lay back down. It’s hard to watch him want play but just not feel well enough to do it.
Yesterday he had to get his port de-accessed and re-accessed. This is because his port can not stay accessed with the same needle more than 7 days. We have never had it in the full 7 days where we have had to change it out and re-access it again right away. We asked the nurse if he could have a couple hours with it out so he could take a bath and play for a while. He absolutely loved the bath and played with his new Aquaman toy. But after a bath, changing into new jammies, and getting his port accessed again he was exhausted and ready for bed.
He slept pretty well through the night last night. However unfortunately when he got his counts back this morning things are still not coming up. His Hgb was 7.7, platelets 10, and ANC 10. This meant he needed a platelet and blood transfusion. These usually do help him feel better in the long run so it’s not a totally bad thing, but in the mean time he is out of it because they give benadryl before the transfusions. So he is pretty sleepy at the moment. He keeps drifting in and out of sleep while watching his iPad.
James and I rotate nights at the hospital with Caleb and nights at home with Tyler. Tyler misses his brother so much. We did sneak in a quick visit after Tyler’s T-ball game the other night, and they FaceTimed each other last night to say goodnight.
We are hanging in there but overall this back and forth from the hospital and home is exhausting. I am hoping we will all be able to be together by the weekend. But mostly I am praying Caleb will start to feel more like himself soon. He already looks better, but he isn’t eating a whole lot each day and it mostly makes me sad that he isn’t interested in playing. We usually do so many activities each day that it’s strange to watch him just lay there and not want to do anything. The doctors aren’t worried though, and are all confident his counts will turn around soon. We just have to wait it out.
So I sit here and stare at Caleb, and then the outside world, and then back at Caleb wondering when we’ll be able to go home. I am always by his side ready to get him whatever he needs to feel comforted or feel better. I wish there was more I could do, but for now, we just wait…