He's Home!

Actually, Adam has been home since Tuesday. It took all day to be discharged, but we hit the road about 5:30 PM and made it home about 7:00. On the way home, Adam had to point out things as if he hadn't seen them in years--"Mom! A tree!" and "Mom, look at the fountain" followed by "Mom, there's two buses!!" He was fascinated by the outside world and well he should be. Adam hadn't seen the outside of his four hospital walls for 37 days.

We made it home safely and immediately set about getting his medicine ready for the night and situating sleeping arrangements. I wish I could say we've settled into a routine, but we haven't. Chaos still reigns.

Friday I took him to his first follow-up visit. It was a day long trip. Blood work was done and the doctor examined him and the conclusion was reached that he has developed GVHD (Graft vs. Host Disease). Though a certain diagnosis isn't really made until a skin biopsy is taken and evaluated, Adam's doctor said the GVHD has presented itself in a classic manner. She's pretty certain, even without a skin biopsy, that that's what it is. Adam is covered in a rash from the sides of his head down to the tops of his legs. He has become extremely irritable and just simply feels lousy. The treatment they've chosen for Adam's GVHD is steroids. This is perhaps the most necessary evil I have ever encountered. Adam on steroids is enough to leave me huddled and twitching in a corner. It breaks my heart to see my baby have to go through this, but I am praying this won't have to last every long. We have another follow-up visit on Tuesday, at which time his condition will be re-evaluated and hopefully (keep your fingers crossed), we will have a better idea of how long we have to keep him on the steroids.

It's been a really stressful being home. There are certainly benefits that I am enjoying, like taking a drive in the car, eating our own food, being able to walk to different rooms, etc., but, I have to admit, I really miss the nurses button!