Saturday, June 18, 2011

Sparkle, sparkle little heart

Yesterday was another glimmer... As ECHO showed further improvement in her heart function! Her overall energy and morale was also wonderful! She had some bedside OT and PT to help with her weak legs and arm. We managed to be so busy she didn't watch ANY TV so I was relieved! Her bloodwork is also showing that the r-ATG is doing its job and diminshing her t-cell count. We have 2 doses left of r-ATG and will be done by Monday morning with it.

The game plan is to finish the r-ATG and get her off other IV meds, switching most to oral. Since she is moving towards being stable enough to go home mid to late next week, we will be checking blood and ECHO every 2 weeks after discharge to keep her out of here. She also will have another biopsy in 1 month to recheck pressures and rejection. The r-ATG treatment will take 3-6 months to fully remove from her system, so we will watch her blood counts to see when she is 'safe' again, but until then she is back to wearing a mask and keeping home more than we had been. This affects school in August (along with other factors I learned yesterday), something far too complicated and better suited for another blog this week when I have time to go into detail.

Gabriella is going home on more meds than she did post transplant! We are going back to all of the original meds she was sent home on last year, plus supplements of nutrients she is lacking, plus meds for her declined function. Her heart needs a significant recovery time, so we will watch for signs of improvement in the relaxing phase of her heart- the function that was badly affected. One day we will attempt to lower the function medications and see how her heart reacts. We are faithful for full restoration though, and will allow God His timing in doing that.

We haven't wanted for anything in here. Nurses have been wonderful and spoil my girl rotten, the gifts & activities have poured in like candy to keep us busy, I have snacks galore, but more importantly we have felt the love in every visit or message. We haven't really felt lonely up here because there is always someone calling, messaging or visiting to make us feel connected to outside. We do miss our hard working daddy, and little brother PJ, but we are doing what we need to in the short term to have long term time together.

God bless every one of you. I hope your Fathers Day weekend is filled with as much hope and blessings as ours!!!!

1 comment:

cici said...

Another miracle in the making for your little sweetheart.
She is surrounded in Prayer and sparkles. :)

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