We started last week with a physical therapy evaluation and an occupational therapy evaluation. Her infant lung function test took place this past Friday. Yesterday she had a chest X-ray, blood work, pulmonary clinic (doctor visit), medicine/prescription review, then bloodwork again. Today she had a bronchoscopy with alveolar lavage and biopsy. She has done great for all the testing so far. She is such a champ, they were surprised that she didn't even cry when they pricked her finger.
Wednesday she will have her regularly scheduled therapy. Thursday is another clinic visit where we hope to hear the BIG news we have been waiting for - "You can go home!" This Momma is getting just a little bit excited typing all of this. (That jet ride on February 4th was a long time ago.) Friday she is scheduled for a cytogam infusion (4 hours) and will get her PICC line out after the infusion. Woohoo!
The thought of coming home is SO very exciting. My kiddo got new lungs & we are getting to come HOME! That makes me Happy Happy Happy. Our family will be together again and distance will no longer separate our hearts.
When we get home, we will continue our new normal and get back in the swing of things with Darby & Daddy. Parson takes many anti rejection drugs each day to allow her body to receive the donor lungs without rejection. These meds work really well and destroy her immune system in the process. So we will work to stay away from germs, sick folks & anything else that may make her ill. Please know we love each of you & would love to have heaps of visitors and run all over town visiting -- but for Parson's sake, it just isn't the best idea for a while. Thanks for understanding why we must sneak around town in and out of places quickly & not linger anywhere for long. Please know that we are not being snobby -- I wish I could stop everyone on the street and visit for a while to share her story.
My heart is so full. Thank you for the love, prayers and support you have shown our family. You have made the load lighter and our hearts so full. Thank you friends - We have come a L-O-N-G way baby!
August 26- Clinic visit