Yesterday I was finally able to speak with Dr. Blume in Boston. She spent over an hour on the phone with me and we finally got some claification on direction and what's going on with Lilli.
First she explanined the transplant evaluation process and all it requires.
1) Lilli will have to have multiple tests and procesdures to find out the overall condition of her body... liver, lungs, kidneys, etc. And even her emotional state.
2) then they will have to find her spot on the spectrum of how sick she is... is she too sick to attempt a transplant or is she too "healthy" to be listed yet.
3) next they will find her place on the specteum of how long a transplant would last her, a year or 20 years
4) we will have to hear all that comes with a transplant from the emotions to the lifelong meds and all of the side effects.
The plan is to get to Boston within the next month. We will be admitted on arrival and plan to be inpatient for about 2 weeks. The bad news is that based on her cath results her lungs currently could NOT handle a transplant, the good news is Dr. Blume thinks we can get her in a better place with some interventions.
Durring our stay they will do the transplant eval and try some therapies to get her lungs working better such as using oxygen, fluild restrictions, some iv medications, and possibly another cath as her stent us narrowing slightly and every little bit might help.
If she is approved, a transplant is about a year away :( and she would have to stay stable the entire wait.
We discussed school and we all agree its just going to too much for her right now :( it breaks my heart and I have no clue how I'm going to tell her :(
Now we are just waiting.... waiting for insurance to approve the evaluation (which apparently can be a mess), waiting for beds to open up at CHB, and praying for a miracle that makes all of this unnessary.
To be honest EVERY option but the pure miracle sucks.... so I'm voting for that :)
Thank you for all of your prayers and offers to help. We are working on setting up a donation website for those why want to contribute finacially.
