During Angela's last stay at the children's hospital, the pulmonologist said to me, "Whatever you do, don't bring her to one of the adult hospitals. She won't get the right level of care. We will continue to treat her here."
Ok. Well to go to the pediatric hospitals we have to have pediatric doctors. I tried to schedule an appointment with her old ped. GI specialist but was told I couldn't because she is 19. She would have to see one of the adult GI specialists there. I hate seeing new doctors with Angela. I hate having to explain 19+ years of medical history, what surgeries were done when and by whom. I just want simple. It is simple when we can go to someone familiar and I already trust. Its hard for me to not put a wall up before we even walk into the office. Thankfully I really liked this new doctor who agreed he should not be Angela's doctor. He was very nice, and very knowlegable. "You know, this is a very rare disease that she is too young to have."
Yes. Yes I know this.
We discussed going out to Boston and the options that are available to us to treat this monster called CA. Unfortunately, because Angela's swallow study is horrible, he doesn't think she is a candidate for any of them. They wouldn't solve her problem. Unfortunately, this is the progression of CA. At some point the epiglottis stops functioning properly and instead misfires. It spasms with every swallow (You can't see it on xray video swallow. It is only evident using manometry, and we saw it 6 years ago when she had it done in Boston.) We could dilate her cricoid again, but it wouldn't solve the problem of the spasming epiglottis. We could inject the muscle with botox to loosen it, but we risk damaging the epiglottis further. There is no "win" for Angela. There is only lose and more lose.
The Dr. confirmed what we already knew. Angela can no longer eat or drink anything safely. Never. Ever. Again. I have dealt with a gtube before. Angela had one until she was 4. She doesn't remember it, but I do. The tube itself is not that big of a deal. Its the psychological part of this process that is tough.
In March of 2014 I sat in the car with Angela and told her I have cancer. At the time I thought it was the most difficult conversation I could have with my child. I was wrong. I didn't know what was ahead of us. This time I had to tell her she could never eat again. None of her favorite foods. Done. It makes my stomach turn in knots just thinking about it.
But let me tell you what is scary. Nobody knows what comes next!! Nobody knows enough about this process to know the next step! Medical theory says this disease process moves downward through the GI tract, but does that mean her stomach will shut down? Her small intestine? One of her organs? Nobody knows the answer to this because people who have this disease die before it reaches this point. We don't know what comes next and it scares me.