Saturday, February 11, 2017

Proceeding Gingerly into GVHD

One of our doctors camped out in pathology last night with the pathologists and Abby's muscle sample results and they have made their decision on how to proceed.  The results weren't conclusive but there is enough evidence that it is GVHD of the muscles to proceed with treatment.  As our last post said, it's going to be a balancing act with her immune system.  Not treating for GVHD when it could be GVHD means she may not ever reclaim mobility and her cells would continue to attack her muscles.  As it is they are hoping they caught it in time to reverse the effects. So, we are heading into treatment.  They started IV steroids last night.  She will get a cousin to the anti-rejection drug cyclosporine  which was in her drug line up until November.  She will take penicillin because of bacteria that can enter the blood from the GVHD/muscle attack. She will also take the antifungal that possibly caused a reaction, since we can't rule that possibility out yet totally.  They will enter into all of this with her slowly, or "gingerly" as our doctor put it.  They will keep a close eye on her as we proceed.

So..... how's Abby?  The liver biopsy and PICC line are over.  She was under for 3 hours.  All went well and she has the new line in her right upper arm.   That is a huge blessing in the midst of all this hard.  She was pretty groggy most of yesterday afternoon and napped a lot. PT and OT showed up at 4:00 to try to work with her and it went okay.  They will be in daily so we are grateful for the help while Abby is fighting it because it hurts so much.  We tried giving her the big pain med but she was so groggy it was hard to work with her.  We'll have to find yet another balance there.  I feel like all this balancing is going to come crashing down any moment! One day at a time.....right?  So she was on oxygen after the procedure and her blood pressure was really low going into the night.  I haven't heard from Mark yet on how she did or if they got a visit from the ICU team to talk about moving her there for the night.  No news is good news?  I hope and pray that Abby's anxiety can come down a bit now because of the PICC line.  Every third person coming into her room for the past week has been there to poke her.  I sit in the living room of our house right now and think that even though this is so hard, at least I get to come home every other day.  Abby doesn't.  She is only watching TV and sleeping right now but we hope that will start to change.  I brought her art supplies, her legos, some books.... I'm praying those get used soon. We will head down to the hospital after lunch today so Anna can have some time with Abby.  Lily has to sit in the family lounge outside the floor because it's respiratory season and she's under 12.  She's a good sport.

Prayers?  Continued healing, strength for all of us as we walk this out, steroid side effects to be minor (grumpiness, sadness, paranoia, obsessive behaviors), no reaction to the antifungal, infection protection, everyone's hearts in this (with 3 girls and me there are a lot of emotions going around!), and wisdom for the doctors as they proceed gingerly.

Thanks!

5 comments:

Claudia said...

Tiffany, Abby,your family and all the medical personnel are in my prayers daily! Also, my small group is praying, as well. Love you guys! God bless!
Claudia

Unknown said...

Praying for Abby and all your family as you go through this painfully, hard time. "God's love never fails, never gives up, never runs out on you!" Praying for continued healing and strength.

"O Lord, when my spirit was overwhelmed within me, You knew my path." Ps. 142:3

"You are my hiding place; You will protect me from trouble and surround me with songs of deliverance." Ps. 32:7

"I cry out to God Most High, to God who fulfills His purpose for [Abby and the Schreiber family.]" Ps. 57:2

Love and prayers,
Debbie

Tiffany said...

Thanks ladies! We need and are encouraged by your prayers and truths shared.

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