Gracie home from hospital/ update

[Guest guest]

Hello All,

I just wanted to fill everybody in on our weeks adventure.

Even though I have been warned countless times that Gracie can have serious problems due to her heat intolerance, I decided to let her go outside on Sunday to play with the hose and help me wash my car. Needless to say I should have thought twice on that one. We were out for about 20 min when she started getting red and hot. The initial temp was about 100 but instead of it dropping after a few hours, like it normally does, it just got higher. By Monday afternoon she was at 105.6. I took her to her pediatrician, who then consulted Dr. Cohen. They decided she had to be admitted at CCF for fluids. Unfortunatly she had a very hard time with getting the IV in because it took 5-6 times before they ended up having to put it in her foot, then tried 4 more times for some bloodwork (wich also ended up out of her foot.) Thankfully they did not give up because, even with the IV, she was dehydrated by morning. They put a second bag (boulus) on her on Tues. morning. Finally with the extra push of fluids she started to come back to her old self again. They wanted to keep her an extra night on fluids just to make sure, so they finally weened her off the fluids today. They decided that she was doing very well so they released her this afternoon. So far she seems to be doing well, other than her walking is a little off (probally from the IV though.) They did test her for any virus they could think of and could find no infection, so we do think it was a dystautonomia thing due to the heat. The nurses learned a little on dystautonomia too, as one of her BP's was a whopping 210/120 I think I was the only adult in the room not freaking out as I know she does this from time to time. I guess I really learned an important lesson, too, on how dangerous the heat can be for her. We decided to not even take her outside until we can have a better method for cooling her outside. We are still waiting for a cooling vest, but I am trying 's idea of a make at home vest. I am headed to Wal Mart tonight so hopfully I can get it done today or tomorrow. Hope everybody else is doing well.

,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007

[Guest guest]

carrie,

I am glad that Gracie is doing better and home safe and sound. We

occasionally learn the hard way what our kids can and cannnot

tolerate. It is all trial and error. now you know! We don't want to

hold them hostage or put them in a bubble but it is hard to know

what we can do and what we can't until it's too late and then, well

now we know!

Glad that the CCF experience doesn't sound like it was as

bad as I have experineced there! Maybe the more they deal with mito

the better it will be for all of us. Even with cohen there I haven't

been too impressed with the staffs knowledge of mito and its multi-

facited layers of prolems!

Dawn

[Guest guest]

Wow! It is amazing what the heat can do to our kids. I have

often worried about Asenath being out in the heat as at times it

really wipes her out and she gets red cheeks so easily. The funny

thing is how unpredictable disautonomy can be. Over the holiday

weekend we were at my parents' house and had a horse drawn wagon ride

for quite a long time. I became pretty worried about both the girls

as the wind went away AFTER we left home and I didn't bring any

fluids or anything to help them keep cool. Zipporrah was getting

overheated so I covered her thoroughly with a shirt and breastfed her

to sleep. Thankfully other than being tired she did ok. I was more

worried about Asenath as she wasn't able to be covered, had no drink,

no cooling vest, and no way to get home quickly IF something

happened. For some reason though on this trip the heat didn't bother

her as much. It definitely wore her out and she was very wiped out

from everything that weekend to the point where she requested to go

to the van to sleep during the fireworks. At 4 years of age you know

they must be pretty wiped to ask that! But I really feel so blessed

that nothing worse happened due to how foolishly unprepared I was! I

thought it would be a much shorter trip and didn't want to limit the

time for the others so didn't ask to turn back even when asked.

ANY WAY... sorry to ramble on. I am so glad to hear she is home

again and doing better. I hope she gets that cooling vest soon!!!

Darla

> Hello All,

> I just wanted to fill everybody in on our weeks adventure.

> Even though I have been warned countless times that Gracie can have

serious

> problems due to her heat intolerance, I decided to let her go

outside on

> Sunday to play with the hose and help me wash my car. Needless to

say I should

> have thought twice on that one. We were out for about 20 min when

she started

> getting red and hot. The initial temp was about 100 but instead

of it

> dropping after a few hours, like it normally does, it just got

higher. By Monday

> afternoon she was at 105.6. I took her to her pediatrician, who

then

> consulted Dr. Cohen. They decided she had to be admitted at CCF

for fluids.

> Unfortunatly she had a very hard time with getting the IV in

because it took 5-6

> times before they ended up having to put it in her foot, then

tried 4 more

> times for some bloodwork (wich also ended up out of her foot.)

Thankfully they

> did not give up because, even with the IV, she was dehydrated by

morning.

> They put a second bag (boulus) on her on Tues. morning. Finally

with the extra

> push of fluids she started to come back to her old self again.

They wanted

> to keep her an extra night on fluids just to make sure, so they

finally weened

> her off the fluids today. They decided that she was doing very

well so they

> released her this afternoon. So far she seems to be doing well,

other than

> her walking is a little off (probally from the IV though.) They

did test her

> for any virus they could think of and could find no infection, so

we do

> think it was a dystautonomia thing due to the heat. The nurses

learned a little

> on dystautonomia too, as one of her BP's was a whopping 210/120 I

think I was

> the only adult in the room not freaking out as I know she does

this from time

> to time. I guess I really learned an important lesson, too, on how

dangerous

> the heat can be for her. We decided to not even take her outside

until we

> can have a better method for cooling her outside. We are still

waiting for a

> cooling vest, but I am trying 's idea of a make at home

vest. I am

> headed to Wal Mart tonight so hopfully I can get it done today or

tomorrow.

> Hope everybody else is doing well.

>

>

> ,

> Mommy to (9), (7), Bre-Anne (6), Grace (2) and our

newest

> arrival is due Sept. 20th

>

> For the latest baby info, and to see our family check out:

> _www.BabyCountDown.com?baby=4007_ (http://www.babycountdown.com/?

baby=4007)