I really do. This past week has been the worst as far as steroid side effects. He's gained almost 5 pounds, has been very moody, and hungry around the clock. He doesn't get mad very often, usually just sad. But when he's on steroids, he gets really mad. He stomps his feet and makes this face:
This was at our clinic visit yesterday. He went from very mad to super sad and then back to mad about 8 times during the 5 minute wait. That's not an exaggeration, either. He would start crying and want me to hold him because he was scared and the next minute he would stop crying, put on his angry face and punch me a couple times while demanding, "Take me home right now!" And then back to the crying. Luckily, the visit was just to check his counts to make sure he didn't need any transfusions so it was pretty quick. His numbers were all ok, thank goodness. White blood cell 3600 with ANC of 2800. Hemoglobin is 12.4 and platelets 238,000.
But I think the worst part about him being on steroids is that he doesn't sleep well AT ALL! And so he's always so tired. Add being constantly hungry to the mix and you've got a very tired family. Three nights ago, he ate a sandwich in the middle of the night - about 2am. The next night it was a couple bowls of cereal. And last night:
nachos.
This picture was taken at about 1 in the morning. Then he woke up again at 4am and came and told me that he was "super duper hungry" and wanted more nachos. He'd woken up at least once (it's all kind of a blur) in between and told me that he was having a hard time sleeping. Then the kicker is that he wakes up at about 5 or 5:30 for the day. Poor kid is just exhausted. And so are we.
His last dose of the steroids was yesterday morning so we're just waiting for it to clear out of his system so we can hopefully get some sleep around here!
Stupid steroids.
Hooray for the good that steroids do and double hooray that it's over! We sure love you.
ReplyDeleteOh Robin! That sounds terrible. No sleep (for you or for him) is the WORST. I'm sure it must make everything just that much harder. I'm sorry and I hope things improve soon. Thinking of you!!
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