We're both still in Missouri. I had the night shift with Kaylee last night, and she actually slept pretty well once she got through an hour & a half of wretching. (At least she wasn't throwing up like the night before.) An upper GI this morning showed the compression of her intestine to be relaxing a bit, so that is good. Meanwhile, the doctors are finally realizing that the diagnosed SMA Syndrome is probably secondary to another gastric condition, which would have started the weight loss initially, and now is preventing weight gain, plus causing pain. They've hung the label "visceral hypersensitivity" on it, but I think that is probably about as difinitive as saying "it's a virus." Another medication (one my sister has found effective over time for gastric complaints) will be started tonight. Maybe that will help restore her system and we can move forward. I really don't care if they can't name the condition, so long as they can treat it! She is temporarily off the tube feeds (but with the tube still in) and on IV nutrition - not a long-term option because of over-taxing the liver. They'll start the tube feed back after they've assessed how being off of it affects her pain & nausea.
Kaylee did a great job today of coping with her various discomforts and challenges. She is trying hard to learn to differentiate between actual pain, and just "feeling wierd." Biofeedback is helping to give her tools for handling the pain, and amazing prayer support is giving her (and us) the strength to hang in there.
Not sure when we'll be home. Jimmy may drive back down in the next few days, while I stay a bit longer & fly home when things look more stable.
Thank you, thank you, thank you, for lifting us all up in prayer to the One Who knows every cell of Kaylee's body. He is using this situation for good for all of us, we just struggle some with wanting to understand right now!
Love you!
Kay
Keep fighting Kaylee! Our prayers are with you! :)
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