Sunday, April 15, 2012

T +17 Chipmunk Cheeks

Miss Ashlea is doing well today.  Her creatinine is 26 but her tac level is up to 19 (it should be between 5 and 8 I think - it was 11.3 yesterday).  Please pray as we continue to juggle her medications and the potential for tacrolimus toxicity.  I don't know how much detail to give you as I don't want to gross you all out, but the cold hard fact is that she has had diarrhoea since the transplant due to one of the other immune suppressants - so if you want to pray for all the gory details please pray that that improves as it is also contributing to the high tacrolimus levels.  And to a very sore bot :(

Murray's creatinine is 553 and his urea 25 which is a slight improvement.  We're hoping his kidney has turned the corner and that his levels will now start to come down.

Ashlea is starting to develop chipmunk cheeks from the steroids she is on - for those who have had kids on steroids you will recognise the cheeks.  Before the transplant I was worried about how the steroids would effect her - especially physically.  It's not a big deal that she has chipmunk cheeks because it means she has her new kidney and the steroids are helping to protect it, but there is a little part of me that is reminded that it is yet another point of difference between her and Audrey (this is probably only something ID twin mums can relate to!).


Rosemary said...

Great to hear positive news - got the 3M cream for the sore bot, brilliant stuff. Love to you all

cheri said...

I apologize for the rogue comment. I've been following your blog for just a while, I am an adult with CP. I am happy Ashlea is doing well and am glad Murray is improving.

Sore bottoms... my MIL had a odd cure that really works, my husband who is a prostate cancer survivor and has 'bottom problems' uses it frequently. it's simply Palmolive Antibactireal dish soap. One squirt in a tub of warm water, could be just deep enough to cover the sore bum, and let her soak. A 5 minute soak is all it takes. Something to think about.

Kellie said...

Frank gets diarrhoea from cell cept- he has had to come off it twice ( for a few days). Also my aunt had really bad gastro on it but has gotten used to it now.

Also, frank developed a fuller face on steroids but within 12 months it went down and you wouldn't have picked it. He went off steroids altogether two years ago, and I see the difference when I look at photos, but didn't notice that slight fullness in real life.

Sarah said...

Really hoping they can help juggle the meds. Not fair to have all the added stresses post op like these, even if they are the norm post transplant.
Hoping Murray's kidney turned the corner and starts coming down lower soon.
I had steroids for my op and post op, they made me very agro, from Ashlea's pic, she doesn't look like she had had that effect so far.

Susan, Mum to Molly said...

My vote for best bottom cream is Desitin.

Hope they get the med doses & levels sorted asap - you need to be crossing worries off your list, not adding more...

Hope Murray's progress continues and even speeds up in the right direction.

You deserve a break - physically, emotionally and luck-wise!

Hugs, Susan xx

Shasta said...

Have you read Ashley Judd's essay about the judgements around her steroid-fueled puffy face? Might help you feel better! :D

Glad things seem to be on a little bit more of an even keel, but we'll keep praying for you.

Casey said...

honestly- I dont know what you mean by chipmunk cheeks. She just looks like a healthy kid.