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!
Maybe you should make a fake nurses button, just to press, kinda like weaning yourself off of... something you'd have to wean off of.
Janna, my wife has always comforted me with this...when God has something good to give you, He brings a trouble in order to make you relish the good. When He has a really big good to bring, He brings a really big trouble.
We hold the four of you in our hearts.
Welcome home! (despite the madness) I love the description of your ride home. It must have been thrilling to see familiar things once again!
Oh, so glad you are home! I am so sorry about the GVHD . . . the other baby who got a bone marrow transplant at the same time as Adam has it, too. Right now, they are treating her with a steroid cream. Our fingers are crossed that for both little ones the GVHD is very, very mild! Welcome home to a new, and hopefully less eventful life!
...huddled and twitching in a corner! I love it! I'm so glad you're home. I pray for that day that your life is no longer full of exhausting drama. It's coming--just hang on!
Love you guys,
Susan and family
YAY!!!! You are back to YOUR bed, YOUR shower, YOUR toys, YOUR kitchen, and so much more!!! I am so happy to hear that y'al have been "set free into the wild." Bummer about eh GVHD but it's to be expected. I'll say an extra prayer that it doesn't get worse. Give my boyfriend a hug and smooch!!
Thinking of you always ...
It means so much to read your posts. There isn't any other email that I react to in the way I do when I see that MightyManAdam has a new update. My heart skips a beat each time.
A 3-yr old boy on steroids does sound daunting. Maybe it will be a cream like the little girl had. Hope so. You are really awesome. God knew what He was doing when sent Adam to you and Mark to be his parents.
I send my love to all of you.
Love, Miss Mary
Oh, how sad about the rash! Hopefully it won't last too long. We continue to pray for all of you. Thanks for keeping us all updated with your posts. In a small way it helps us to feel like we are with you.
Love you all,
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