Ashley's Story

She will leave fingerprints all over your heart


Morning Update

Ash initially woke this morning in a very foul mood.  She didn't want to be touched by anybody!  I don't blame her though.  I don't really like strangers pulling back my blankets right after the sun rises either!

Once she was fully awake, the grumpiness didn't cease too much, but now she is sitting up in her bed and looking much better than she has in 16 days.  She is signing "bye-bye" and "thank you" to the staff and although I know its ultimately her way of saying "get out" they think she's being sweet.  I, on the other hand, KNOW my girl and her attitude and she's figured out that when she wants them to be done talking and to leave the room all she's got to do is say "ummm, thanks and see you later!"  You just gotta love Ash!

So I truly believe that the acute illness from this infection is subsiding and that is good news.  With the decrease in swelling, tenderness, breathing struggles, and  lethargy she is getting better.  The problems within the bowel as settling themselves out, and I am SO thankful for this team and their willingness to be thorough and specific with all the tests which ultimately gave it time to work itself out before operating on her.  I can only imagine how horrible this would have been had they opened up her abdominal cavity.  She still has a long way to go, but the changes in her behaviour are very encouraging.  When I sat her up this morning the first thing she did was point to her wheelchair, sign "car, go, now".  I know she's feeling better because she's done with being in this bed.

She is still very weak and sleeps for hours and hours (like 4-5) between each episode of sitting up for 20-30 minutes.  I think its going to take a while for her to build her strength and stamina back up.

Ash is on an anti fungal IV treatment for this yeast infection.  It looks like  insurance won't be covering it outpatient and the daily bill for it will be $110.00.  Ouch!  She is on it for a minimum of 14 days.  Its gonna get interesting.  I'm going to see if they have anything similar to it that will be as effective.  Its crazy that the insurance will cover the cost of the medication inside the hospital while running up the bill higher and higher but won't cover it at home where we aren't billing thousands of dollars a day to sit in the bed.  I'll never understand insurance.

The overall picture of Ashley's decline and disease progression has not changed even though we are transitioning to home in the next couple of days.  Her liver is still failing, her loss of kidney function will remain, her spleen continues to eat up her red blood cells and swell.  Life is not going to get easier for her. Instead it will more than likely begin to get a little bit harder each day, but we are seeing signs of her quality of life returning after this current illness.

I have a conference this afternoon with the pallative care team just to get an understanding of how it works.  It doesn't mean that we have made a decision about re-transplantation yet.  It just means I am trying to look at all options and both sides of it all.  I'm hoping I can get through this without falling apart.

Thank you so very much for your prayers.  I'm feeling stronger today than I have in a while. She is working hard at feeling better.  We  have avoided an invasive surgery that Monday we were told she had to have.  God is working in this situation and I know you all have been praying.   I appreciate you all so very much. This has been a long, hard, journey, but so many of you faithfully walk along side us year after year.  I am so humbled by your presence here with us.  In my weakest moments I can almost feel as though I am being held and surrounded by " a cloud of witnesses" and the image it brings me is so very comforting.  I'll forever be grateful.  


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