Thursday, May 3, 2012

1 Year Post-Transplant Evaluation - Houston, TX

Its been a busy week!! We spent April 27/28 Friday/Saturday in Nashville. I ran/walked the Country Music 1/2 Marathon on Saturday.  This race has a special meaning for me, I did it in 2009 while I was pregnant with Elizabeth and part of the course goes by Vanderbilt, where we spent months inpatient. The whole time I kept thinking about my precious girl and how hard she fought to breath for so many months and continues to do at times. It really is motivation to keep going! If she can fight through all that I can make it 13.1 miles!!

Elizabeth and Daddy met me at Mile 12!! The extra push to get through that last 1.3 miles

Sunday we flew out for Houston. Elizabeth had appointments on Mon, Tues, Wed. Monday was lots of blood work, evaluations with PT/OT, nutrition and an appt with her transplant coordinator
 and Dr.  On Tuesday she had her bronchoscopy to check her lungs out and on Wednesday we had our final checkout appt with the transplant team. They are pleased with her progress and based on her labs and how things look, she is doing well. The testing from the bronch will take a few days to come back but we are hopeful there will be no signs of infection or rejection. The best news in all this is that we are 1 year out, so the every 3 month evaluations will now go to every 6 months!!! So we wont have to come back to Houston until October (unless she needs to come sooner). It will be good to have more time at home, and not have to worry with traveling so frequently, or maybe just maybe we can fit a REAL vacation in somewhere over the next 6 months :)

Having her blood draw is becoming more and more of a fight. I feel so bad for her! She had to get stuck 2 times on Monday, 1time on Tuesday and an IV on Tuesday.  This will be a never ending thing since she will have bloodwork and testing for the rest of her life, I just hope as she gets bigger she understands why we have to do this. She just looks so pitiful and mad at her daddy during it! I cant bring myself to hold her down, so he gets stuck being the bad guy.
We fly home tomorrow, and then drive to Nashville Sunday for another airway dilation procedure on Monday, which will be another overnight hospital stay as well. Then hopefully we can settle down and be home for a while!!

So happy to be celebrating 1 year with a good report! Praying for continued health and happiness for our miracle girl!