This is a copy of an email I sent to her rehab Dr. this morning...
Dr. GOoch-
Ellie was inpatient this week at PCMC. WHen she came in on Sunday her temp was 31.1 C. and her heartrate was dropping into the 40's. After many tests they started her on CLonidine to try and regulate her autonomic nervous system.
we came home yesterday (Thur) after receiving 2 doses of clondine. When we got home she was clammy and pale. (she was not this way when we left the hospital.)
Last night at 11:30 PM her temp was 86 deg. F. and her heartrate was dropping into the 40's. We got her warmed up and her heartrate came back up also.
Her temp normally runs cold--I'm guessing about 96. This morning she was 97.4 . She is sleepy and she seems groggy/loopy/eyes glazed over.
If she would have done this in the hospital I don't think they would have discharged her.
I don't know whether to bring her in to ER, her pediatrician, taper off the clonidine, or if they can just readmit her without going back to the ER. The clonidine didn't keep her temp from dropping dangerously low. Something is wrong.
How long does the clonidine take to kick in?
I don't think I like the clonidine.
**************************end of email*******************
We probably should have gone back to the ER last night. But we prayed about it and felt like it would be OK to stay home. We put an electric blanket on her and I slept with her so we would know when to shut off the electric blanket. We have got to get this figured out. We can't go on like this. Too scary...Too stressful.
This morning she is actually on the warm side. Her temp runs cold. I'm guessing 96. THis morning she is 97.4. She is not quite as clammy as she was yesterday.
Her blood pressure has been OK.
We have got to do something.
3 comments:
Did she email back? You DO need Dr. House! This is so weird! Hope you get some rest. I can help. We are healthy. Can I give you a break?
Oh, so scary for you! The answers can't come fast enough. Tonight I'll be at the temple and I'll put Ellie's name on the prayer roll. Please call if you need more help with the kids.
I'm so sorry. I hope the get it figured out. I wish I had seen your post on the BP cuff earlier. I have a pediatric one in the garage that I rarely use. Please let me know if you need anything.
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