Caleb spiked a fever today as some of you may already know. A fever is considered an emergency for him because it could be a sign of an infection, and that could be especially dangerous because of his central line (his port). Here is the way the day went down and what we know so far…
The morning started off pretty normal. We usually have a low key morning where Caleb watches his iPad or we play games. The only thing that was different about this morning was that Caleb actually fell back asleep for a while after Tyler left for school. That is very rare but I didn’t think much of it given where we are in his cycle. His counts are low which automatically means low energy. When he woke up he asked for more cereal and ate another bowl of his favorite, Cinnamon Toast Crunch (AKA “Crunch Crunch”).
When he finished eating he asked if he could sit on my lap because we were watching a movie. The second he crawled on my lap I knew he felt warm. I waited a couple minutes just to be sure and then went and took his temperature. 100.4 under his tongue!
A sinking feeling came over me as I tried not to panic. 100.4 is still in the range where they tell us to observe him for an hour and take his temp again. So I called James to come back to our apartment (he was at work) to take a look at him. We sat with him for a while longer and watched him look worse and worse. He was just laying down and didn’t want to do anything. On top of that his next reading from the thermometer was slightly higher. About 45 minutes went by and we decided we better call his Clinic at St. Jude.
James and I didn’t make this decision lightly because we know if he has a fever they will immediately admit him, and that’s exactly what happened. He had a temp of 100.9. They immediately drew blood from both his port and his arm to run cultures. This will help them identify if he has an infection, and if so, if it’s in his central line or not. They also gave him a dose of antibiotics and Tylenol to help him feel better.
Caleb slept for a while. I met James there after staying home to pack clothes, food, and toys for the hospital stay. When I got there it was time for us to go upstairs to our hospital room. Caleb actually perked up for a while and sat up and had a snack, watched his iPad, and built legos.
Not long after he got settled in a room I had to leave to pick Tyler up from school and spend the night with him at home. Unfortunately after I left Caleb started to go down hill again. Since Caleb’s Hgb and Platelets were low they wanted to give him both a blood and platelet transfusion. Benadryl is one of his pre-medications for transfusions so that he doesn’t have an allergic reaction, because as I mentioned before that did happen to us one time.
They gave him the Benedryl and started the first transfusion. Vitals including blood pressure and temperature are always constantly monitored during any transfusion. Not long after starting the process Caleb spiked another fever. They are attributing this to the Tylenol wearing off, but this is not a good sign as it means his body is still fighting something. They stopped the transfusion, gave another dose of Tylenol, and decided to wait a little while before starting the whole transfusion process over again. Tylenol of course makes him feel better, which is good even though it’s masking an underlying problem. But it at least gave him enough relief to sit up and eat a good dinner.
On top of all of that, since Caleb’s nose is running and they still haven’t identified what if any infections he has, he has all these extra precautions for going in his hospital room that he’s never had before. Every nurse or staff member that goes in his room has to be fully dressed in a gown, gloves, and a mask. James and I don’t have to do this thank goodness! But the nurses, PCA’s, etc all do. James and I aren’t sure if it’s because they see something growing on the cultures already or if it’s just a precaution because his nose is running, but it definitely made me a little nervous.
Very late in the evening they decided to start the transfusion process again, which meant his normal pre-medications plus another dose of Tylenol to make sure the transfusions wouldn’t be interrupted again. I just got word from James that he made it through both the blood and platelet transfusions just fine, so everyone is going to get some sleep now.
It has been an exhausting and emotional day. I am worried that he’ll spike another fever or they will come in in the morning and tell us something grew on the cultures. Either way we are looking at a couple days in the hospital at minimum. We will not be discharged until he goes 24 hours with no fever (and no Tylenol) and his blood counts start to recover.
It hurts so bad to see him not feeling well. I absolutely hate that there isn’t much we can do for him. I don’t like it when our family gets split up. Tyler was sad tonight that daddy and Caleb weren’t home. The whole thing just sucks. We are getting tired of all of it for sure! But we also know there is no better place Caleb could be when he isn’t feeling well. They monitor him very closely and know what to do in every situation. I will be anxious to hear what the doctor says during his rounds tomorrow. But until then we all need to get some sleep. More updates tomorrow…
Thanks for posting. Praying hard for a quick recovery.
Praying for Caleb and the family.
Praying today is a better day for Caleb & all of you, fever is gone & his counts climb back up to a normal range!!! 🙏🏻🙏🏻🙏🏻