I thought today was going to be a good day. Caleb had no appointments on the schedule for St. Jude, and we had plans to play with his new play-doh set. I was also hoping to get him some outside play time since he missed out on that getting his transfusions yesterday. Tyler was back at school, so I was planning on picking him up a little early so he could play outside as well.
All that changed when Caleb started acting very tired, mopey, and all around like he wasn’t feeling well. He was just laying around and didn’t want to play. His head felt a little warm so we took his temperature, but he didn’t have a fever. So I tried to just tell myself that he must need rest, and that’s ok. We put on a movie and everything was ok until he suddenly got up and told me he wanted to go lay back down in his bed. Caleb never goes back to bed. This is very unlike him. I went in his room to sit with him. We put on a movie and he fell asleep. But as I was sitting there watching him I still couldn’t shake the feeling the something was wrong, so I woke him up to take his temperature again. We got a reading of 101.4. Fever is a very big deal with his counts being low, or what they call “Neutropenic”. This means his body has no ability to fight off sickness or infection. We were always told that if this happened we were to call his clinic immediately and take him in.
So we drove him to St. Jude and when we arrived they immediately told us we were going to be admitted for observation and a dose of antibiotics. They also had all of these little glass bottles set out ready for his blood cultures. If anything grows on the cultures it may show whether he has some sort of infection, but in many cases they told us they are unable to pinpoint exactly what caused the fever. In any case, antibiotics should do the trick.
When we arrived at the clinic he didn’t have a fever, but they told us it’s not uncommon for fever to spike, come back down, and then spike again. So we were moved to an inpatient room where they just put him under observation and checked his temperature every so often. About 2 hours later his fever spiked again with a 101.1. They immediately gave him Tylenol and a dose of antibiotics. It was like magic. The kid that had been sleepy and lethargic all day came to life and started playing again. It definitely made us realize how sick he was feeling all day, and how much the medicine had already helped.
We also got another reading of his counts, and his Hgb and Platelets are back up after the transfusion yesterday. This is a very good sign that his counts are recovering and things are turning around! His ANC was still 0, but hopefully that will change soon.
I am not sure how long they will keep us inpatient. We were originally told 48-72 hours, but we’ll see. They like to get a reading off the cultures about every 12 hours, so we should know more tomorrow if anything came back positive. But thank goodness he is already feeling better. James stayed with him tonight in the hospital room, and I am with Tyler at the apartment tonight. We will switch places tomorrow.
The inpatient stays are so hard because it’s hard to be cooped up in a small room, and it stinks for our family to be split up. But as I was talking to one of Caleb’s nurses this afternoon he said some patients that have to get bone marrow transplants have inpatient stays that last a month or more. I was immediately grateful for our relatively short inpatient stays. I was going stir crazy on day 4 of our last stay. I can’t even imagine what families go through that have to live there that long. It definitely made me grateful for our situation, because so many people have it worse.
I will post another update as soon as we have more info, and hopefully to tell you that we were able to go home!