These past few days have been...hair pulling...here is a rough synopsis...
Wednesday & Thursday
...both were relatively good days. Nights were restful; mornings Kaylee is up and about; by mid-afternoon achy legs and ankles; by evening, swollen ankles to the point that she can't walk. Plus, with her 3rd round of spots barely beginning to clear on Wed. afternoon...she had round 4 spots appearing~on top of the still very visable round 3 ones and spreading to her upper thighs and arms, plus her ears.
Friday
...Kaylee wakes up and has a tummy ache, so we give her meds an hour early...Mike calls doc to discuss the continued spot break-out, achy/swollen feet and the am tummy aches...he says to add another dose of meds through the day...which we do, thinking we were "on top of the symptoms." Mike and girls & Aaron and fam. camp out in the backyard again...We give Kaylee her 3rd dose of prednison at 12:30 am...
2am arrives, Kaylee has major tummy cramps...coming and going every 15-20 min. finally throwing up at 6 & 6:30 & 6:45...so we take her into the ER; seeking some pain management and wondering "what are we doing wrong??? is it the meds? wrong diagnosis? isn't there any pain med we can give her?"
Saturday
Spent the morning in the ER (arriving at 8am)...waiting for the ped. doc to come and have a chat with us...the ER doc is having no success in giving Kaylee any relief, she continues to have cramping & vomiting every 20 min. We are pulling our hair out!! ER doc calls the ped doc a 3rd time to see when he is coming down (11am) Ped doc "recommends" admitting Kaylee to the ped floor...we are finally transfered up at 2 pm and the admitting nurse says, "oh, the doc is out running errands, he'll be back soon. He knows Kaylee is coming." AARRGGHH!! Anyhow...he finally shows up about 3?? "Oh, the ER wasnt' giving her enough morphin...this disease will wax and wan over weeks, hopefully not months...I would hope she won't have anymore flare-ups...all we can do is support her symptoms, we'll just keep her overnight to make sure we rehydrate her well enough for her to go home...blah blah blah."
So, we were able to glean some info regarding this illness, confirmed a few things...and at least he'll talk to us on the phone next time...(We'd tried calling abouts 7 am, but he refused to speak to us...despite being able to see Kaylee's file...which is understandable, to an extent...but WHY DIDN'T HE COME DOWN TO THE ER!!)
Sunday
Anyhow, once Kaylee's pain was under control...alternating between morphine and tylenol every couple of hours...she was able to sleep and sleep and sleep...waking up at 1:15 am "Mom? (I wake/sit up ready to help her handle the pain) I'm hungry."
She ate bits throughout the night and morning...still had some cramping that we were able to control with tylenol...napped some...then finally home by 4pm...
So it seems that we have survived this lastest "flare-up" with at least a better understanding of how to manage the next bout (hopefully there isn't one) and knowing that we'll have another doc. to call on our list that will talk to us if we have any more questions.
P.S. Thank you to my mom & dad, Melanie, Aaron & Allison & crew...for taking care of our girls and keeping them entertained!! And thanks to Stacy, Jaime and Emma for visiting Kaylee at the hospital.
Wednesday & Thursday
...both were relatively good days. Nights were restful; mornings Kaylee is up and about; by mid-afternoon achy legs and ankles; by evening, swollen ankles to the point that she can't walk. Plus, with her 3rd round of spots barely beginning to clear on Wed. afternoon...she had round 4 spots appearing~on top of the still very visable round 3 ones and spreading to her upper thighs and arms, plus her ears.
Friday
...Kaylee wakes up and has a tummy ache, so we give her meds an hour early...Mike calls doc to discuss the continued spot break-out, achy/swollen feet and the am tummy aches...he says to add another dose of meds through the day...which we do, thinking we were "on top of the symptoms." Mike and girls & Aaron and fam. camp out in the backyard again...We give Kaylee her 3rd dose of prednison at 12:30 am...
2am arrives, Kaylee has major tummy cramps...coming and going every 15-20 min. finally throwing up at 6 & 6:30 & 6:45...so we take her into the ER; seeking some pain management and wondering "what are we doing wrong??? is it the meds? wrong diagnosis? isn't there any pain med we can give her?"
Saturday
Spent the morning in the ER (arriving at 8am)...waiting for the ped. doc to come and have a chat with us...the ER doc is having no success in giving Kaylee any relief, she continues to have cramping & vomiting every 20 min. We are pulling our hair out!! ER doc calls the ped doc a 3rd time to see when he is coming down (11am) Ped doc "recommends" admitting Kaylee to the ped floor...we are finally transfered up at 2 pm and the admitting nurse says, "oh, the doc is out running errands, he'll be back soon. He knows Kaylee is coming." AARRGGHH!! Anyhow...he finally shows up about 3?? "Oh, the ER wasnt' giving her enough morphin...this disease will wax and wan over weeks, hopefully not months...I would hope she won't have anymore flare-ups...all we can do is support her symptoms, we'll just keep her overnight to make sure we rehydrate her well enough for her to go home...blah blah blah."
So, we were able to glean some info regarding this illness, confirmed a few things...and at least he'll talk to us on the phone next time...(We'd tried calling abouts 7 am, but he refused to speak to us...despite being able to see Kaylee's file...which is understandable, to an extent...but WHY DIDN'T HE COME DOWN TO THE ER!!)
Sunday
Anyhow, once Kaylee's pain was under control...alternating between morphine and tylenol every couple of hours...she was able to sleep and sleep and sleep...waking up at 1:15 am "Mom? (I wake/sit up ready to help her handle the pain) I'm hungry."
She ate bits throughout the night and morning...still had some cramping that we were able to control with tylenol...napped some...then finally home by 4pm...
So it seems that we have survived this lastest "flare-up" with at least a better understanding of how to manage the next bout (hopefully there isn't one) and knowing that we'll have another doc. to call on our list that will talk to us if we have any more questions.
P.S. Thank you to my mom & dad, Melanie, Aaron & Allison & crew...for taking care of our girls and keeping them entertained!! And thanks to Stacy, Jaime and Emma for visiting Kaylee at the hospital.
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