We had a good time at the symposium, but the information was overwhelming.
We decided in February to go on Palliative care and stop seeing doctors... we had given up hope... Our last visit to Ohio was a disaster, Dr. K did manometry on Ana and it did not follow the same protocol as Dr. N. The results were almost normal, but not accurate. She slept for two hours of the test and then was allowed to walk, play, bounce in the bed, etc... I was a mess trying to argue with the floor nurse that the test was not being done right! And... there was no one there to monitor her, she was hooked up and then left with us until the test was done! It was bizarre!!! We got so upset and decided we were done searching for help.
Then Friday night of the symposium, Stefani (a mom with 2 mito warriors) sang a song called "One More Day." Here is the link: http://projectcuremusic.com/ where you can read about it. The song is the first on the CD. During the song, everyone in the room, all 500+ were crying. It made me realize that I cannot give up! We are so close to finding a treatment and this is just not the time to give in to this disease! I got more from that song then I got from the whole symposium... one line in the chorus goes "Can you look into my eyes and say that I'm not worth a cure?"... oh wow I was crying...
O.K. so then Saturday I got time with a few dr.s... like an interview process... And when I got to Dr. G... I knew I had made it to the right place. She went into details about the peripheral neuropathy and how it could be caused by deficiency in vitamin B or some other vitamins... or even in some enzymes. She thinks the whole thing could be caused by her GI tract not absorbing just right. But, on the other side, she said that it could just be the disease if all of her levels check out. I was able to give her Ana's life story from birth, KKI, Boston, Houston, Cincy, and of course the local dr's... some good and some bad. She talked with me about transplant! She said that in Pitts they do transplants on Mito patients as long as they don't have a POLGI mutation. My ears were perked. She doesn't think Ana's stomach will make it another 10 years, and transplant would be better before she becomes too weak and dependent totally on TPN. She said we are too close to a treatment to give up now, and she is right. This, the woman my children and I walked on Capital Hill with... is now willing to treat Ana like a child "...worth fighting for..." (another line in the song), not a child with a death sentence. I am so humbled by this whole experience.
With all this being said, we are headed to Pittsburgh on August 9th. Ana will be admitted and she will have all of her levels checked. She will have consults with GI, transplant (just an evaluation), Cardiology(to address the leaky valve and low blood pressure issues), pulmonology(to address the elevated CO2 levels), Urology(to address the severe neurogenic bladder), and then the peds team who coordinates the care of chronically ill children. She will be admitted under Dr. G's service, so she will coordinate all of the care for this first visit.
So, in a week I went from a mom at peace with a child who is dying to a mom at peace with a child who "needs a louder voice" (also from the song One More Day).
Thank you for your prayers and support. This is a journey no parent should have to take, and we are grateful to God for giving us the courage, strength, and endurance it requires.
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