At approx 12.30am Dylan's fever spiked to 37.8 which is only classed as low grade so not enough to go in to the hospital. He was asleep at the time. I left him ten - fifteen minutes then woke him up to give him an additional dose of Piriton to see if it was Cytarabine related and if that would help settle his temperature. When he was awake he had some juice and his temp was 36.8 but then it climbed back to 37.2 after he had gotten up to the bathroom, although a fever is only anything over 37.5.
I do recall him still having low grade spikes the very first cycle we used Hydrocortisone without the Piriton as well which is why I gave him an extra dose to see if it helped. His temp spiked back to 37.5 once he fell back asleep but I was unsure if the piriton had chance to kick in yet, as it can take up to an hour, so I left him until 2am then checked again. I got differing temps that time. Firstly I got 36.9/37.0 then he rolled over and I tried the side he had been lying on and got 37.7 but then that subsided to match the other side at 37.0, so truthfully I was absolutely stumped as to what to do. The cut off for going into the hospital is 38.0 now so we were mostly watching and waiting.
By now Mike was home and neither of us really knew what to do at all! I was exhausted and aching from sitting in the car so long earlier. All I wanted to do was sleep but I daren't relax. We actually have three thermometers that's how anxious we are in this house! We opted to try and sleep, me still fully clothed of course! I set an hourly alarm to check him at 3.20am when his temp was 37 again. At 4.25am he was 36.8 and I meant to set another alarm for 5.30am but I forgot to switch it on!
He woke up at 6.45am with no fever and in good spirits. I wasn't sending him to nursery, however, because I didn't want to tempt fate if he was likely to have a funny turn. The way things had been though was like textbook Cytarabine syndrome trying to break through the Hydrocortisone, especially with the timings of all his spikes etc.
By 11am I regretted not sending him to nursery because he was climbing the walls! The nurse came to do his chemo at 12.30 and we used the powdered Hydrocortisone like we use to do.. and NO bad reaction!! I am thrilled with this because he really did get so upset and it had started to impact on how he was reacting whenever something bothered him.
He has been perfectly fine all day today really running riot. He got tired by 6pm which isn't surprising considering his unsettled night last night again. He is finally in bed and hopefully sleeping, as he likes to play at bedtime lately. He had no fever when I put him to bed, if anything he was a little cold. This whole thing screams chemo to me rather than infection, I am praying that his cultures are clear. If we have a good night tonight I will phone the ward in the morning to see if there are any preliminary reports back yet. The official 48hr mark would be approx 3pm ish tomorrow but I should be able to get an idea in the morning hopefully whether anything has started to grow.
Praying for a better night all round, I need more than 2 hours of broken sleep myself to function properly this weekend!
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