Sometimes I forget to post

We did all of the environmental changes to help her maintain her body temp. That seems to be helping. BUt it is a lot of work to always make sure she as a space heater on and blankets etc...

She dropped again Tues night about 6 PM. We had put her in her bedroom and didn't realize the heat vent was closed. We caught her at 91 deg F. It took 2 hours of warming her to get her up to the hgh 92's. At 91 her heartrate was droping into the high 30's. As her temp comes up so does her heartrate.

It really stresses me out when she drops, especially when her heartrate drops.

I took her to the pediatrician on Wed morning to talk all of this over with him. He suggested that maybe it is pressure on her brain stem because that is where your temp and your heartrate are regulated. She has a cyst where your cerebellum is (right above the brain stem) and she also has hydrocephalus (extra fluid inside of her brain). So that totally makes sense. He wanted to send her in for a CT scan. Why didn't the Dr.'s at Primary's think of this???

I asked him about redrawing bl ood because both of the previous times they did the blood cultures she was on oral antibiotics already. I thought maybe that could be masking an infection. He agreed.

Wed we had the pediatrician in the morning and 2 more Dr.'s appts in the afternoon. Dysphasia(eating problems)and nutrition (those 2 are together), and the hand Dr.

I talked to nutrition about the possibility that she might not be getting enough calories. We changed her formula to a lot lower calories right before this whole temp thing came about. She had been gaining too much weight so they reformulated her feeds so that she would be losing weight. SHe said it's possible but not likely. We might try going back up on her feeds if she continues to drop.

She has developed a trigger finger (pops when you straighten the knuckle) on her left ring finger. They injected steroids into the swollen tendon. We have to wait a week to see if it helps. It was interesting because I thought the problem was in her finger, but it was in the palm of her hand. The fingers are controlled by a series of pulleys that go through a narrow opening. A trigger finger is when one of the pulleys gets swollen so it is hard to go through the narrow opening. So the injection was in the palm of her hand.

Thursday we had another appt in SLC. This time it was the follow up with rehab (they are in charge of the new medicine-clonidine). I spoke with her about the 2 drops in temp she has had at home since starting the med. SHe wanted to leave her on the same dose for a little longer. If she continues to drop then we would raise the dose. If her BP doesn't drop within 10 days (today is day 9), then I can stop taking per BP and just give her the med. Thank goodness. Her pulse is very faint and is very hard to hear plus I'm new at it and it's hard anyway. We should have bought an automatic BP cuff instead of manual. But I didn't want to spend the money for only 10 days.

While we were at PCMC (Primary Children's Medical Center) we also did the head CT and blood work. Along with looking at the fluid pressure in her brain I also asked her pediatrician to write orders for them to look at her sinus'. The rehab Dr. said that she would only drop her temp when she is sick. Since they can't find anything in her blood and she has so many problems with sinus' I thoght that maybe she has a sinus inf. Not that a sinus infection would cause your temp to drop dangerously low by itself, but maybe that is the sickness she has right now. THen because she is sick her temps drop. If we can get rid of the sickness then her temp won't drop. Or maybe we just really need spring to get here fast.

Needless to say, we are sick to death of Dr.'s.