Temperature Swings

So the pseudomonas infections I was talking about previously never really went away. They weren't getting worse, but they werent getting better.

Last weekend we ran out of her clonidine (medicine to regulate her autonomic nervous system...ie: heart rate and temperature). It has to be compounded and anyway we kept running into snags. So we went without it for a few days.

We finally got more medicine on last Wednesday.

Well Wednesday morning she had a fever of 102. (remember her normal is 96.5) We got her cooled down and we jsut figured it was because she hadn't had her medicine for a few days.

Friday night her temperature dropped to 90 and her heartrate to the low 40's. We got her warmed up. It took about 2 hours.

Sat night she dry-heaved twice. So we ahd to vent her. It doesn't necessarily mean she is sick it could just mean she has air in her tummy. She ahs had surgery so she can't reflux, but it also means that she can't burp.

Sat night we forgot to turn on her feeding pump overnight. (she ahs hypoglycemia-low blood sugar).

Today, Monday, when she got home from school she looked pale. So we took her temp. It was 95 on her forehead. SO a little cool, but not bad. (for her). We decided to stick her under the electric blanket to get a jump on it before it got bad. Well we hooked her up to the pulse ox which also gives you a heartrate. Her heartrate was 39-43. Usually with a temp of 95 her heartrate would not be that low. It only goes that low when her heartrate drops to 90 or below. So I took a rectal temp. It was 90. Not 95.

We tried warming her up a bit. Her heartrate wasn't coming up. THen her oxygen dipped. So We decided to take her to the ER.

We did not dare go all of the way to Primary's so we went to Ogden Regional. It was our first ER visit there. They were very fast. ANyway they did an EKG and got an IV placed. THey were unable to draw any blood. THey were going to do a bunch more tests, but I said what if we just get her stable enough to transport to Primary's.

They called Primary's and an ambulance was arranged.

When we got to Ogden Regional her temp (rectally) 92. By the time the ambulance got there it was up to 94 (ear).

THe ambulance people cranked up the heat for her and by the time we got to Primary's she was at 95 (ear).

She is feeling and looking much better now that she is warmed up. Se is now in the low 96's. Her heartrate is back up. She is off oxygen. SHe really looks pretty good.

So here's my prediction...I think that the infection she already had (lymph nodes, trach site and groin) has gotten worse.

With her previous hypothermia spells the Dr.'s predicted that she can't regulate her body temp very well and when she gets an infection that her body temp really gets out of whack.

But it could also be because we missed the few days of clonidine.

Well so far at primary's we have had an EKG, blood, urine and chest x-rays.

THe plan was to go to the floor, but the Dr. just told me that there are a few new things on her EKG so they will be sending her to PICU.