Aimee is doing okay. She doesn’t feel good for sure, fairly lethargic, respiratory issues, and even slower digestion of her gastric secretions, but thankfully her temp has been stable. Unfortunately, we still don’t have approval on the targeted prophylactic inhaler antibiotic. Ed went to Seattle tonight to pick up an enteral antibiotic that would potentially cover the infection. Unfortunately, after getting it home, we found that it may clog her j tube. It actually did clog it when it was mixed with her other meds. We were able to clear it and get the other meds in, but are nervous to try this one again. If it clogs the tube, all of her other meds cannot be given.
We are waiting on calls back from the pharmacy. It sounds like her pulmonologist wrote the prescription for a g-tube administration, so pharmacy filled it not realizing that we would be using a med pump through a j tube. They are working on a solution, but at this point, we don’t have a workable treatment option still. :( there is a different antibiotic that can go through the tube she has, but it is a huge volume. I don’t think Aimee would tolerate it or be able to absorb it.
Hoping, hoping that we can keep Aimee home. She is stable at this point and we have great tools here, but we need a way to treat the infection itself.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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