Home Sweet Home

We were discharged from the hospital are home catching up and resting. Trip feels “free” again and even did some breakdancing so the doctors & nurses could see how ready he was to leave. The Methotrexate has not been too hard on him other than spending the few days in the hospital and being hooked up to machines. He has been nauseated but finally ate a little when we got home. Hopefully we’ll be back to our normal until we go back in 10 days (assuming his skeletal x-rays show signs of improvement).

His endocrinologist added a test while we were there to see if he is producing cortisol. He was on high-dose steroids for a big part of last year, so we weren’t able to test. We have been supplementing him with a small amount of hydrocortisone since he came off prednisone. The test proved his adrenals are not making cortisol, so we will continue to have to supplement the rest of his life. We have a shot that we have to keep with us for emergency situations and have to give him stress doses when he’s sick or goes under for scans or surgery. This of course can be and has been managed, but was still a disappointment to learn that his body isn’t doing its job in that area either.

We are humbled to have so much support from all of you. Every time we feel sad or overwhelmed, we are reminded how much support we actually have and how many people are in our corner.

I am so thankful my son came home from being in the hospital for days and still felt like going outside to play. I am thankful my family can have dinner together and can sleep under the same roof tonight. I am thankful that I can shower in my shower and sleep in a comfortable bed. I am thankful I have a full pantry to go to when I get hungry tonight. My lesson is not to ever take the luxuries in my life for granted. There is always something to be thankful for.