Another New Normal

Can I say again how much I hate CF!  I feel like I am grieving the loss of the life Rosie had for the last year. While she isn’t gone, her good healthy lungs are gone. It seem like such a slap in the face that she got to have a real life but then it was taken away so soon.  The doctors have come to the conclusion that this is chronic rejection. She needs to start photopheresis treatment to stop any more damage to her new lungs. She got her double PORT today. In a week she can start using it for the photopheresis treatment.  The treatment should stop any further damage to her lungs but it can’t undo any of the damage that has already been done.

She will have to come to St. Louis for two days once a week for five weeks and then every other week for  five months to get the photopheresis treatment. Then if she is doing well it will go down to once a month. We thought it could be done at Riley in Indianapolis but now they are saying no it can’t.  It can’t be done in Albuquerque either. They don’t do this treatment in pediatric patients there. 

Four months ago her lung function was 74%. Today it is 26%. We are back to having oxygen in our house again, vest treatments, breathing treatments and night time feedings. 

I am thankful that she got to expierence living life with healthy lungs even if it was for only a year. I just hate that it didn’t last longer. Maybe she will get a second chance someday but second transplants are harder to do and like with the first transplant, there are no guarantees. We were so blessed to have waited less than 3 days for the call. And we are so blessed to have gotten the year that we did. It breaks my heart to know that is over now.

I don’t know what the future will look like for Rosie. I just know it will be different. She won’t have those healthy lungs giving her the life she deserves and that is breaking my heart. 

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