Tuesday, December 3, 2013

Rejection still, biopsy 2

Mariska had cath again November 20th

6am check in time is the worst part, but finding the results that day makes it all worth while. She went to sleep talking to the anesthesiologist  about his dog and what tricks he can do, ha he can tell time. Breakfast time and dinner time. Was the happiest I've ever seen her for a cath.    This one was smooth and she finished early. =) We played noisy games in recovery, until the kiddo next to us stopped crying then read books until she was ready to go down for clinic.

After the IV was pulled TX team told us not to pull it.. bad sign when that happens.

Mariska's heart chamber pressures are still extremely high,  TX said over all some numbers went up others down so they called it the same as the last one. boo hiss. They debated about admitting her again for another round of IV steroids but decided she could just go back up on the dosage at home.  She did go to school for a few days with her big 3m green mask on friday. but then missed all the next week (short week)

Her teacher sent home a bunch of homework and books to read and pass off. She was excited and read them all before we got home. She is starting to LOVE reading. I'm proud of her for her desire to learn.

Her cath showed rejection this time.

C 2.5 V2 ISHLT 1 PAMR 0

Still Cellular rejection. (if we had to pick a rejection to deal with it would be this one)

Last week she had labs. Her Cellcept (anti rejection drug she's always on) Didnt even show up in her blood. Now we're a bit worried. So rised that along with prograff her other main drug. Hoping they have finally become stable.

I looked at photos of her when school started she has changed so much! I love her chunky cheeks but wish it was back to normal again.  I tell her every day I love her cheeks and I wanna squish them. She'll look at me smash them together then pinch them for me. HAHA love her.

She had clinic yesterday Her heart still looks great! but her neck you can still see the vain pulsing telling us her pressures are still scary high.

One the 16th she will have a full cath (the enter in two places, and has to lay flat for 4-6 hours after. They want to check her pulmary arties and make sure they are still doing ok. The worry about those if they become damaged it would mean another transplant sooner then later. SCARY stuff.

Mariska's weight has been intersting. When she got sick her low was 37lbs now she's almost 52lbs!

We had a great Thanksgiving with my parents brother and his girlfriend. It was small and not crazy like most years. There is not a day that goes by where I dont think of Mariska's heart donor and their family. Their gift has let me have so many wonderful mermories with my sweet girl. They are always close to my heart.

Thanks for all your payers, wishes and thoughts. They have helped calm sole and have peace in my heart.

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