Better?!?!?!?

So I posted about her temp drop on Thur night. So Fri I left messages at her pediatrician, 2 messages at Rehab and an email to rehab. Since I couldn't get ahold of anyone I took hr to PCMC ER.

Although she wasn't having problems at the time I took her in I couldn't have that happening every night.

Jason got off of work and came with me to the ER because I could not mentally and emotionally take anymore.

The ER dr.'s got the on-call rehab dr. to come down and talk to us. THankfully it was the same dr. who had worked with us when we were inpatient.

He sat with us for at least a half of an hour and talked and listened and brainstormed with us. It made us feel much better.

I was concerned that this medicine was supposed to help and yet the night that we come home her temp drops. He said that she was on a very low starting dose. I have an appt. next week with a rehab dr. and we can go up on the dose if it is not doing the trick.

THe Dr. also explained something that I knew, but never realized I knew. Ellie is colder than us in the winter and warmer than us in the summer.

I wanted to know if he thought the temp was making her heartrate drop or vice versa. He said yes, the temp was the first thing.

I also got to talk to him about the stuff I read ont he internet. I read that if your temp falls into the 80's death is imminent and also that you shouldn't warm up a person with hypothermia more than 1 degree per hour. He said that is only for people who fall in an ice cold lake or something. We shouldn't worry about the speed of warming her up.

I asked what temp we should try to stay above. Or at what point would we either call or bring her to the ER. He said for a "normal" person 94. For Ellie maybe 92. If we can't get to and keep her at 92 for a few hours then we should take her in.

THe literature that the nurse gave me on clonidine said not to stop taking it all together, you have to taper off because it can cause your blood pressure to skyrocket. He said that she is on such a tiny dose that it would never happen. We could skip 3 or four doses and nothing would happen, or we could quit taking it all together and nothing would happen.

We were not admitted to the hospital---we got to come home.

I was ready to quit the clonidine because of her pale/clamminess/drugged look. But he said that is not a side effect of clonidine. So I am willing to give it another try. The pale/claminess/sleepiness went away when I skipped a dose. If they come back then we'll have to reevaluate.

So far her BP's have been fine. We are not supposed to give the dose if her systolic (top #) drops below 80.

Yesterday her temp stayed an average of 96-97. It was awesome. She felt warm all day long. It kind of feels weird to feel Ellie's skin warm though. It actually kind of creeps me out. Because usually she is FREEZING. SHe was also awake all day yesterday (Fri).

Friday night she had a sleep study scheduled for her sleep apnea. (Unrelated to the cold temps-it was scheduled a long time ago). So Ellie and I did that last night. THey hook about 20-30 electrodes all over you, watch you with a video camera, listen with a baby monitor, you have oxygen tubing and a bi-pap mask on. How they think you can sleep "normally" with all that stuff on, I don't know.

Anyway, we got there at 8:30 last night, got to sleep about 10 PM. She woke up at 5:30 AM and we left about 6 AM. She is sleepy today---obviously.

I told the sleep people about her low temps and low heartrate. So I asked them to wake me up if her heartrate dropped into the low 50's. She looked at me like "can you be alive if your heart-rate drops that low?"

She maintained her heartrate last night, so I'm assuming she maintained her temp.

We made a lsit of things we are changing to prevent the low temps. Here they are...
-reprogram thermostat so it doesn't go lower at night
-Move her bed from the front room (where it has been) (and probably the draftiest room in the house---old windows) back to her own bedroom (a lot smaller, new windows, it is the warmest room in the house)
-put insulation in her bedroom windows (you know that stuff you put ont he outside of your house before you put up siding)
-Buy an electric blanket, just be careful not to let it get too hot
-Buy a space heater with a thermostat for her bedroom
-position her bed on the interior wall, instead of exterior
-put smaller amounts of formula in feeding pump to avoid using icepacks around it
-buy fleece sheets for her bed
-reprogram the apnea monitor (raise the low heartrate setting) so that it will wake us up if her heartrate drops to 50, then we can wake up, take her temp and warm her up
-put up blinds (we have had them for years, but haven't put them up)
-No more camping for Ellie if it gets cold at night, she will "get" to stay at Grandma's house (always while camping her heartrate drops during the night---I never figured out why until now) (She also has allergies) (She hates camping---she just sleeps the whole time) (And she absolutely loves condos or hotels)
-Lastly---look at moving into a new house

Really this is all coming together. I am feeling much more confident and reassured.