Day +17 Today was Really Tough

Ryan's rash is slightly better in appearance and his ANC was over 600 today! The bad part is that he is still itching like crazy at times - to the point where he thrashes around in bed screaming and crying "Itchy!" "Itchy!!!" At one point, I was trying to explain to him why he couldn't yet have another dose of IV anti-itch medicine and he looked me in the eyes with a miserable look and screamed "Why aren't you doing anything to help me?!?"

In addition, the pain behind his knees has gotten worse and now he also has the same type of pain inside his elbows. He could only stand for a few seconds today before he would start screaming and crying in pain. "Pain!" "Painful!" "My legs are killing me!!!!" Even sitting on the toilet and on the shower seat today was really painful for him.

To add insult to injury, the behavioral side effects of the steroids kicked in too. High dose steroids affect kids MUCH differently than adults. Ryan turns into a completely different kid. He basically was angry and verbally abusive to me all day and would have episodes of pure rage. Nothing I did was right or what he wanted, even when I had done EXACTLY what he just asked me to do. He even screamed at me "YOU SHOULD BE ABLE TO READ MY MIND!!!" (and he meant it.)

I can't blame him for being angry and lashing out, and the psycho behavior is the steroids talking. However, it is draining both physically and mentally for me. I was in tears by this evening. It is extremely upsetting to see him so uncomfortable and in pain (and blaming it all on me).

All day, no matter what I tried to do to help him, it just didn't, and his steroids told me how inadequate of a job I was doing. I finally agreed to let the nurse give him IV morphine because the Oxycodone wasn't doing much for his pain.

I started wondering things like "What if he can't walk right ever again?" and "What if he is in chronic pain for the rest of his life?" He even made a comment along the lines of "It's because of that man's cells inside me. We should put my cells back!"

I started to get caught up in the "what if's" but I quickly reminded myself of the advise I have received from other transplant parents to not look too far ahead and only take things a few hours at a time.

My day ended with the night shift nurse basically telling me that they can't be spending as much time helping with Ryan tonight because there are kids on this floor sicker than him.

We have had so many great nurses here, but there are a few we have run across that really need to work on their people skills!