So here's what's happening. Cohen was given his first injection of neupogen yesterday at the hematologist's office. His Absolute Neutrophil Count was on its way down again, steadily decreasing over the past three weeks. He needed help defending his temple and we hope to get the little white buggers moving in his blood stream again.
Problem is, this stuff is taking a huge toll on him. He is moaning and crying a lot and that just sucks. We had to trade one problem for another and while I know we did what's best for him, I still hate seeing him so miserable. He wants to be held a lot. He'll be okay, though. He's learning how to be tough and if I try to look on the bright side, my biceps are getting a much-needed workout lately. :) I read online that this medication can cause deep aching bone pain and grown adults have been known to squirm with the pain, but they assured me one shot probably wouldn't be that painful; based on his response, I'm not as sure as they are.
On top of that, last night we had our first (and hopefully last!) nerve-racking experience losing his G-tube button, or as I've called it before, the gateway to his gut. Luckily we noticed before too much time went by - they say you only have twenty or thirty minutes to get it back in before it starts closing up, which means no food until they can sedate him and insert a new one again and all that surgery entails. Yeah, I was sweatin' it. We found the button in my Aunt's lap (she was holding him at the time) and I quickly popped it back in and tried to fill up the balloon -- to no avail. Looks like it popped somehow. As luck would have it, I just put it in a week ago and hadn't yet received my spare (these things can last up to a year the GI doc tells me, though I don't think I'd want to risk that), so off to the ER we went with tape holding it in place and me checking constantly to make sure it didn't fall back out again. So, this dragged on for a while: what would have taken ten minutes at home took an hour and a half of lovely ER time (not the place you want to be with a child who's neutropenic, right?) with wonderful company in the form of poor wracking, coughing, burning up children ripe with virus and fertile enough to share. Yikes. And while I felt bad for those parents and kids, I still found chairs as far away- and as isolated - as possible.
Today, he's acting weak and agitated and he looks pale as a ghost, but we have our follow up appointment Monday to recheck his count and see how he's doing so I guess I can ask more questions of the doc then and hang in there in the meantime. I just wish I could make this go away. What a nightmare. Why are so many children suffering so much nowadays? What is happening?
At least the weather is absolutely beautiful out here. Hannah had dance today. They're learning a dance for the big recital in June. They're going to be chickens. Yes, chickens. Not just any chickens, either, but "Groovy" and "Far Out" chickens. Guess there is a difference. Cool.
When I signed my kid up for this, I have to say I never imagined the chickens. Their costumes are so fluorescent, I'm sure they'll glow in the dark and the feathers on their head pieces are true show girl material. Guess you can't always be a princess in ballet class. :( Surprisingly, their dance is cuter than I expected, so I guess it'll all work out in the end. One of the young dads was saving the words to the song in his phone so his daughter could practice at home. I wanted to ask him if he'd be singing the song for her. That would be too funny.
Hope you are all doing well! California is only two months away! YAY! Can't wait to see west coast beach again, and friends and family too :) I miss everyone.
No comments:
Post a Comment