Another ER visit...on Aug. 23...
Yes...a BIG UGH!! from us!
Kaylee woke up from a nap Wed. afternoon with a bit of a tummy ache(5:30pm). So, gave her some Tylenol, had her eat, gave her some IBP...she started throwing up abouts...6:30 pm, couldn't get anything to stay in her...not even her pain med or prednisone, etc....we kept trying...meds, throw-up, meds, throw-up...thought we had it a bit under control by midnight, but she threw up again...20 min after we'd gotten some meds in her...she was in so much pain...so back to the ER...
Well, most everyone in the ER had never heard of her condition...they looked it up...the doc came in...wanted to give her some anti-nausea stuff...I asked why? (because...her throwing up isn't because she's nauseated, its because her stomach is cramping and cramping until it finally gives a big squeeze and everything comes out). I just wanted to know if he had a different view as to how to treat the whole thing...so, he decided to consult Kaylee's previous visits to the hospital and then get back to us....This is what he said when he came back in, "Well, you have been dealing with this disease for weeks now and most likely know more than what I can look up on the internet right now. So tell me what you want me to do." I wanted him to bring the Ped. doc down, but maybe because it was 2 am in the morning....anyhow...we had them put in an IV and once we got some morphine and prednisone in her, we were able to get home by 8 am.
What a night!!
So, our thoughts as to why she had another "relapse" (if that's what it was.) Perhaps because we'd weaned down to much on the prednisone...we were down to 5 mg/day when the tummy thing started up. We'd noticed that her spots were increasing once we'd gotten down to 10 mg/day. Or maybe it was just time for another "break-thru" in stomach cramping. Perhaps, no matter what dosage she is on, "it" just builds up until a break-thru occurs, then a big dose of prednisone helps to settle things down.
Who knows...we are SO FRUSTRATED!!
Kaylee woke up from a nap Wed. afternoon with a bit of a tummy ache(5:30pm). So, gave her some Tylenol, had her eat, gave her some IBP...she started throwing up abouts...6:30 pm, couldn't get anything to stay in her...not even her pain med or prednisone, etc....we kept trying...meds, throw-up, meds, throw-up...thought we had it a bit under control by midnight, but she threw up again...20 min after we'd gotten some meds in her...she was in so much pain...so back to the ER...
Well, most everyone in the ER had never heard of her condition...they looked it up...the doc came in...wanted to give her some anti-nausea stuff...I asked why? (because...her throwing up isn't because she's nauseated, its because her stomach is cramping and cramping until it finally gives a big squeeze and everything comes out). I just wanted to know if he had a different view as to how to treat the whole thing...so, he decided to consult Kaylee's previous visits to the hospital and then get back to us....This is what he said when he came back in, "Well, you have been dealing with this disease for weeks now and most likely know more than what I can look up on the internet right now. So tell me what you want me to do." I wanted him to bring the Ped. doc down, but maybe because it was 2 am in the morning....anyhow...we had them put in an IV and once we got some morphine and prednisone in her, we were able to get home by 8 am.
What a night!!
So, our thoughts as to why she had another "relapse" (if that's what it was.) Perhaps because we'd weaned down to much on the prednisone...we were down to 5 mg/day when the tummy thing started up. We'd noticed that her spots were increasing once we'd gotten down to 10 mg/day. Or maybe it was just time for another "break-thru" in stomach cramping. Perhaps, no matter what dosage she is on, "it" just builds up until a break-thru occurs, then a big dose of prednisone helps to settle things down.
Who knows...we are SO FRUSTRATED!!
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