Sunday, February 19, 2017

We're Home!

Sorry for the delay in posting. Abby came home Tuesday night. She's been improving daily and we've been busy figuring out life at home. She's using a walker some but getting stronger each day. More to come when things slow down a bit!


This is Mark, I'll add some too---

Overall Abby is doing better but still needs a lot of help. I think the rehab of her muscles will take long time but she is a hard worker and I so we are hopeful that she will be able to regain full range of motion and full strength. The biggest help has been the steroids. They are a double edged sword amazing help but also rough side-effects. She's on a high dose of methyl-prednisone and though it is a wallop of a dose, she seems to be tolerating it ok. She was on IV dose of it that was at 100mg twice a day, then 56mg twice a day when we got home. That's pretty mega dose (I've been on a small 5 day prednisone pack and I was at 50mg for just 1 day and I'm twice a big as her).

On Friday she went back to the clinic and they did some blood work and since it came back good they dropped her down to 35mg twice a day and they will continue to taper her off over the next 4 or 5 weeks until she is off of the steroids. She will stay on the anti-rejection drug for much longer and then they will ween her off that one as well.

All of this medication is aimed at stopping the inflammation and muting the immune response so that Abby's new blood cells (that are genetically Anna's) stop attacking her muscles. What the Docs think happened was that a virus, drug-response, infection or something triggered a normal immune response to go and attack/clean up the intruder in Abby's muscles. But, somewhere in there, the cells went a bit crazy and just kept attacking the "foreign invader" which happened to be Abby's muscles. We talked to a rheumatoid Dr. for a long time about this and he was super knowledgeable and helpful, if Abby's wasn't a past bone marrow transplant kid he wouldn't been handling the case as he see this type of auto-immune response a lot in his line of work. Anyway, it was good to hear from such a knowledgeable Dr. in that deals with this stuff daily. He was quite optimistic that she would recover well. He also said that this response typically comes from a trigger and once you calm down the response it goes away. We may have to watch out for what the trigger might have been (we'll stay away from the 2 new meds that she had taken) but we may never know what that trigger was as it could've been a virus that they just don't have a test for that particular strain.

Anyway, she's on the mend but it is going to take some time to fully heal. Lots of pills again. Still have to hook her up to fluids and IV anti-fungals, and do lots of exercises... it's a full time job but at least we are home.

Thanks for reading,