Aaron's Hyper IgM Journey

Monday, November 5, 2012

So far so good, but too soon to tell

Aaron is doing great!!!!  We couldn't be happier.  Today, the doctor said his skin looks better than it has since he got GVHD and his stools are normal for the first time in months and months.  Aaron is still on high steroids and a new medication called infliximab.  Not until he goes off of these medications will we know if the new photophoresis treatment is really working.   By the end of December, the steroids should be low enough to have a good idea how the new treatment is working.

Aaron was discharged from the hospital Thursday after doing 14 days of photophoresis.  We are now doing treatment five days a week as an outpatient.  During one of his treatments, I noticed my pants were feeling really wet.  I looked down and the bed was covered in blood.  Although I should have been alarmed, I wasn't.  At this point, after everything I have been through, a bed covered in blood did not affect me much.  Come to find out, both of Aaron's lines broke in the same location and were leaking blood.  Thankfully the lines were able to be fixed without surgery. 

Our hospital stay was not too bad.  Aaron rode his trike almost daily up and down the halls and would wave at the doctors and nurses.  He went to the PT/OT room three days a week and would cook soup in the kiddy kitchen.  He loves his food toys.  He has also started watching cooking shows on youtube.  His current favorite is Jamie Oliver making an omelet. 

Towards the end of the stay, Aaron lost interest in walking, his trike, and any kind of activity.  He still does not want to do much.  I am hoping this is due to weight gain from the steroid.  He is also in desperate need of playmates. 

Halloween was a bust.  Aaron refused to wear his train engineer costume.  Child Life put on a parade with people in costumes and went by the patients rooms so they could look out the window.  However, Aaron was hooked up to the photophoresis machine and could not see the parade from his bed.  There is always next year and I BELIEVE Aaron will be healed and able to go trick or treating for real next year.

1 comment:

  1. Precious Aaron, we love you! By the way, great taste in cooking shows...we love Jamie Oliver over here!!!