Sorry for the massive delay in updating the blog. Lilli did fantastic in Boston and surprisingly we were not there nearly as long as I had feared. The team there was on top of the whole transplant evaluation process and everything ran quite smoothly. Lilli did have to undergo lots of testing and procedures but thankfully the only invasive test was the heart cath. We met with a pharmacist, nurse practitioner, social worker, physiologist, physical therapist, liver dr, kidney dr, orthopedic dr..... Needless to say we were able to learn quite a bit more about what's going on with Lilli.
Last week we had an appointment with our cardiologist at Children's with a phone conference with our cardiologist in Boston to find out the recommendations.... We were told Lilli is not currently a heart transplant candidate. She is considered very high risk as she has countless factors that would increase the mortality rate of attempting or surviving with a donor heart. They did say if at some point she deteriorates to a horribly poor quality of life it might be worth the risk, but not at this point. The crazy thing is there are actually cases of patients still having PLE even after transplant!
We found out she does have some liver and kidney damage from her heart anatomy causing extra pressure as well as from all the diuretics she requires. It's nothing major at this point but increased her risks. They were also able to test her bone density and it was horrible :( again from her diuretics. We found out her oxygen levels are ok while sitting, sleeping, etc. but when she gets up even just to walk they go down to about 85%.
I have to say I wasn't very surprised with this news and in a very weird way it was sort of a relief. Now we won't have to leave our life in MN behind and move to Boston for 3+ years, now we can enjoy life and make the most of each day. I'm beyond petrified of the future..... They said its impossible to know her outlook. She could have one year or 10 years. Unfortunately her oxygen will continue to lower, her liver and kidneys will have progressive damage done,and she will probably not grow much at all (because her body can't absorb protein and nutrients well). We pray that she can remain healthy enough long enough to the point where there are new and other medical options or treatments.
With all of the generous donations our trio to Boston was fully covered with enough left over to give Lilliana a fantastic Christmas and to save for our continual medical costs. I truly cannot thank you all enough for your support.
So it will be a day by day journey. I'm trying to remain positive as much as I can and not let this be the beginning of the end. I know deep within my heart that whatever miracles God wants to work through her I will be thankful for!