Wednesday, December 14, 2011
Medical Mystery Child
This is what I am beginning to call Caroline, half jokingly, half seriously. Today she had a kidney scan as a follow up to her initial nephrology consultation a few months back after way too many UTIs month after month. Well, today they found a lot of fluid in her abdomen that shouldn't be there, so they are doing another scan tomorrow to get more information, a clearer picture as to what is causing these ascites. My fear is always concerning liver or kidney failure because of all the meds she is on and the lithium in particular. We have always had to walk this fine line between keeping her stable, and keeping her healthy. I have often feared that we are unknowingly choosing quality of life over quantity of life for Caroline. Not that we are giving her drugs expecting her liver or kidneys to fail, but knowing the possibility is there invites guilt. She is the most stable she has ever been since about the age of 3 on this med mix, but if her organs begin to react negatively, we will obviously have to reduce or eliminate certain medications and that means instability and who knows what. This poor kid can't seem to get a break! We pray that the fluid is completely benign in nature.
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3 comments:
Praying!
I know how you feel. My daughter's finally pretty stable after a rough 3 years & 4 hospitalizations. Her liver enzymes are a little elevated due to the lithium. I decided a while back that in our case her quality of life will take precedence over quantity. She's having some involuntary muscle movements from the increase in geodon, but she said she doesn't want to decrease it because she feels good now. So what do you do? The combination and doses of meds are such a delicate dance - and ever changing. I know all her meds can't be good for her, but self-harm and wanting to die and being violent is no way to live. Sigh... I'm hoping she'll become more stable with less meds when she hits her early 20's. She's 17 now, so at least there's some hope.
I’m with you on this one, our son is having a kidney biopsy soon to determine the damage from his reflux he had as a baby. The results may determine if we can continue with the Lithium--our miracle drug that is not only saving his life, but giving him so much joy and peace. I can't imagine if we had to quit this medication. The decisions we have to make are incredible, I often don't feel equipped. Right now, the doctor feel his mental stability is more important that the risks to his kidneys. It is a very scary line we have to walk.
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