I was shocked the first time I heard of an older child with CP getting a trach because of complications. Her mom told me it's never really over. It's really not. There are always new challenges.
Abby saw the neurologist yesterday, who of course, thinks Abby's problem is GI. GI thinks her problem is Neuro. Go figure. The bottom line is that something has to help her. She is in a terrible limbo. She's not better, she's not worse. We are going to do some autonomic nervous system tests next week. He's looking for other syndrome's that could be contributing to her illness.
Part of me wanted to say no thanks, we've done all we're doing. But I can't say that. I know I won't do anything else invasive on her, but she could have some things going on that can be helped with medicine. He also suggested trying a med for her that has been pulled from the market for having the possibility of serious heart complications. He thinks the benefits of the drug for problems like Abby's would outweigh the risks.
He felt very strongly about quality of life over quantity. Nothing says that Abby would experience the heart problems, but we would have to go in to it knowing that if it made her more comfortable there could be significant trade off.
So do we risk her life to not have to see this face everyday?
That's not an easy call. We definitely have to pray about our next steps with her. The easy answer should be "no way do we try a medicine that caused sudden death in 10% of users". She isn't an easy answer kind of girl and the doctor and I feel like she's miserable enough to consider it. Her life is also at risk with the central line and the non working belly, so that makes this a question of comfort.
To end on a positive note, I went to a church I liked last Sunday. I'm not sure where Emily and Abby would fit, but we'll see. It was good for my soul to enjoy worship/sermon so much.
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