Tuesday, December 6, 2011

Steroids: Prednisone - HATE them!

Steroids are horrible, nasty, evil things.  How can a few little pills transform a child so quickly and change him so completely?  He started with 140mg per day: 70 in the morning and 70 at night.  After the first month, they let him start to taper beginning with the evening dose and said it would help him sleep. So, for the past 7 weeks, we have been dropping 10mgs off the evening dose each week.  Last week we were down to the last 10 and looking forward to Monday when he wouldn't have to take them at night anymore.  Well, our farewell to evening steroids didn't go quite as planned.
With the bone marrow aspirate that he had to do yesterday, he couldn't eat anything after midnight the night before.  Absolutely nothing in his mouth after 11.  Well, that means he missed all his morning pills.  He didn't mind that, it was actually a wonderful treat for him to get to skip half of his daily 40+.  Well, you can't just "miss" steroids once you're on them.  You have to taper them very slowly because they do unimaginable things to your body and getting off them is actually very very painful.  I called the clinic last night not knowing what dose to give him since he missed his morning 70 and now it was time for his evening 10.  The answer?... take all 80 at once and go back to your regular schedule tomorrow. Huh? are you serious?? ...woah, it's going to be a long night! See, along with everything else they do, steroids give him insomnia and don't let him sleep.
Jacob had this "brilliant" idea that maybe if he took them right before he was ready to go to sleep, he'd fall asleep before they had a chance to mess with him.  Maybe he figured he would have some bad dreams, but get to sleep through the nightmare.  ...wrong.  Right around midnight, his oximeter beeped because his oxygen level was too low.  The tubing to his nose from the oxygen machine had slipped out of place.  It woke him up and we adjusted the tubing.  His "saturation" recovered but then the pain started in his back, then spread to all over and to his legs where the biggest pain settled right into his knee.  Soon he was rocking back and forth in his bed and pulling his legs up, then stretching them out, bent, straight, side, back, other side...nothing helped.  I gave him 2 oxycodone and 1 ativan.  Ativan helps with anxiety and he was beginning a full on panic attack.  His breathing got short, and fast, and heavy.  Then he started just growling and moaning, it was horrible.  I had flashbacks of life in ICS at the hospital while he was going through chemo, but even then, his fits were not this violent.  He wanted to punch something but there was nothing he could safely hit.  I offered him stuffed toys or a soft ball to squeeze in his palm.  No, not interested.  He told me to just go sit on the couch, "there's nothing you can do mom".  So I did.  He didn't want me rubbing his legs or feet now, he just wanted to be left alone. Maybe he was afraid that he would hurt me.  He was not himself at all.  I decided to go sit down and look up steroid effects and see if the Ativan would be expected to help any time soon. I sat there, feeling helpless, listening to him as he growled, and moaned and tried so hard not to scream.  Then I heard a thump...he had hit the wall by his bed.  I told him to be careful. It didn't happen again.  I'm assuming that hurt pretty bad.  Lesson learned...
Finally after 1 1/2 hours like this, he began to relax.  By then he let me rub his feet and legs.  As I did so, he seemed to finally drift off to sleep.  I got to sleep about 2am once I knew he would be okay.  I'd love to say that I slept then....but Jericho woke up at 3 so I went to lay down with him to get him back to sleep.  Slept there for an hour or so until it was too uncomfortable around 4:30 and then got in bed with Joshua since his room is next to Jacob's and I wanted to be sure he was okay.  I woke up again at 6 and tried sleeping in my own bed next to Josh, but he had to get up at 7 so that didn't last long and I gave  up trying by 7:30.  I wish I just didn't need sleep.  It seems like more stress trying to get it than to just learn to live without it.  I know that's not true, but when virtually every night goes like this one to some degree...you learn to live with 2 or three hours of sleep and just keep going.