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Hey all,

Thanks for your thoughts and prayers. A very special thankyou to

Jodi Z. for the very consice wake up call. I hate it when we " know "

what to do but then second guess everything.

We took Olivia to emerg at 5pm and we had a very positive

experience there. We explained everything to the RN and she said

she'd never heard of RSS so what's the protocol? We told her and we

weren't even put into chairs, whisked right back to the Dr. He

seemed unconcerned that she was spilling such high ketones because

her blood sugars were stable but I tried my best to explain that it

was very different from diabetes. I also had my big MAGIC library

binder and gave them a copy of the RSS brochure, H-28 and a couple

others. Half way through my explanation he said it sounded quite

involved and since he'd never heard of RSS we obviously knew more

than he did so asked for protocol again. Within a few min she was

hooked up to a D-5 IV. He was very concerned that D-10 could

skyrocket her too fast and I wasn't going to argue the point since

he was going along with everything.

He said she would be released as soon as she stopped spilling but

changed his mind when I said we're worried she'd be right back in

hosp from not eating yet and unable to sustain herself.

Would you believe he sat at the ward desk and read through all the

papers I gave him!? I was astounded to say the least!

Anyway after 20 hrs gut rest Olivia was finally hungry! I had

them turn the IV down to 5ml/hr and she did great.

By the time we got home tonight she started spilling trace ketones

but I wasn't worried because I knew her appetite would be way better

at home than at the hospital.

Olivia's already eaten 1/2 a jar of Country chicken caserole

babyfood and 1/2 jar infant blueberries. I know, I know, it's baby

food, my mom hates that I still feed it to her but..... she LOVES

it and it's all loaded with cornstarch so I figure, why not? It's

also got to be tons easier to digest since it's made for babies

which is good for a system that's been down. She's also had bites

of a cookie, mini wheats, and a fruit snack. No ketones when she

just went to the bathroom.

Sorry this is so long, we're doing ok now and Olivia's picking up

a lot! Fever broke finally in the middle of the night, that really

wiped her out too.

Thanks again to everyone here in my wonderful " extended family " !

Leah, mom to 10yrs

Olivia 5 yrs, 11mths, 21 lbs, 36 " (lost a bit of weight

but not too bad)

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Leah,

I am so glad you had a good experience at the hospital. I love to

hear that. Sometimes doctors can be so darned hard to talk to. But,

thank God everything went well and they were so willing to follow the

protocol. Good job for advocating to keep her in a little longer

until she was eating again. Good girl! :o)

Keep us posted on how she does. I hope she is back to her normal

self very soon.

Take care,

Jodi R.

>

>

> Hey all,

>

> Thanks for your thoughts and prayers. A very special thankyou to

> Jodi Z. for the very consice wake up call. I hate it when

we " know "

> what to do but then second guess everything.

>

> We took Olivia to emerg at 5pm and we had a very positive

> experience there. We explained everything to the RN and she said

> she'd never heard of RSS so what's the protocol? We told her and

we

> weren't even put into chairs, whisked right back to the Dr. He

> seemed unconcerned that she was spilling such high ketones because

> her blood sugars were stable but I tried my best to explain that it

> was very different from diabetes. I also had my big MAGIC library

> binder and gave them a copy of the RSS brochure, H-28 and a couple

> others. Half way through my explanation he said it sounded quite

> involved and since he'd never heard of RSS we obviously knew more

> than he did so asked for protocol again. Within a few min she was

> hooked up to a D-5 IV. He was very concerned that D-10 could

> skyrocket her too fast and I wasn't going to argue the point since

> he was going along with everything.

>

> He said she would be released as soon as she stopped spilling but

> changed his mind when I said we're worried she'd be right back in

> hosp from not eating yet and unable to sustain herself.

> Would you believe he sat at the ward desk and read through all

the

> papers I gave him!? I was astounded to say the least!

> Anyway after 20 hrs gut rest Olivia was finally hungry! I had

> them turn the IV down to 5ml/hr and she did great.

> By the time we got home tonight she started spilling trace

ketones

> but I wasn't worried because I knew her appetite would be way

better

> at home than at the hospital.

>

> Olivia's already eaten 1/2 a jar of Country chicken caserole

> babyfood and 1/2 jar infant blueberries. I know, I know, it's baby

> food, my mom hates that I still feed it to her but..... she LOVES

> it and it's all loaded with cornstarch so I figure, why not? It's

> also got to be tons easier to digest since it's made for babies

> which is good for a system that's been down. She's also had bites

> of a cookie, mini wheats, and a fruit snack. No ketones when she

> just went to the bathroom.

>

> Sorry this is so long, we're doing ok now and Olivia's picking up

> a lot! Fever broke finally in the middle of the night, that really

> wiped her out too.

>

> Thanks again to everyone here in my wonderful " extended family " !

>

> Leah, mom to 10yrs

> Olivia 5 yrs, 11mths, 21 lbs, 36 " (lost a bit of

weight

> but not too bad)

>

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That is awesome Leah! Thank goodness for the good advice and the

Magic information ... I'll have to double check that I have that

Article. What a wonderful doctor to listen and learn! I am so glad

for you that you had such a good experience. It brings faith back to

humanity. Glad that Olivia is on the mend.

Dawna

Matt 12, 11, Kaitlyn 8 and Noah 3 RSS

>

>

> Hey all,

>

> Thanks for your thoughts and prayers. A very special thankyou to

> Jodi Z. for the very consice wake up call. I hate it when

we " know "

> what to do but then second guess everything.

>

> We took Olivia to emerg at 5pm and we had a very positive

> experience there. We explained everything to the RN and she said

> she'd never heard of RSS so what's the protocol? We told her and

we

> weren't even put into chairs, whisked right back to the Dr. He

> seemed unconcerned that she was spilling such high ketones because

> her blood sugars were stable but I tried my best to explain that it

> was very different from diabetes. I also had my big MAGIC library

> binder and gave them a copy of the RSS brochure, H-28 and a couple

> others. Half way through my explanation he said it sounded quite

> involved and since he'd never heard of RSS we obviously knew more

> than he did so asked for protocol again. Within a few min she was

> hooked up to a D-5 IV. He was very concerned that D-10 could

> skyrocket her too fast and I wasn't going to argue the point since

> he was going along with everything.

>

> He said she would be released as soon as she stopped spilling but

> changed his mind when I said we're worried she'd be right back in

> hosp from not eating yet and unable to sustain herself.

> Would you believe he sat at the ward desk and read through all

the

> papers I gave him!? I was astounded to say the least!

> Anyway after 20 hrs gut rest Olivia was finally hungry! I had

> them turn the IV down to 5ml/hr and she did great.

> By the time we got home tonight she started spilling trace

ketones

> but I wasn't worried because I knew her appetite would be way

better

> at home than at the hospital.

>

> Olivia's already eaten 1/2 a jar of Country chicken caserole

> babyfood and 1/2 jar infant blueberries. I know, I know, it's baby

> food, my mom hates that I still feed it to her but..... she LOVES

> it and it's all loaded with cornstarch so I figure, why not? It's

> also got to be tons easier to digest since it's made for babies

> which is good for a system that's been down. She's also had bites

> of a cookie, mini wheats, and a fruit snack. No ketones when she

> just went to the bathroom.

>

> Sorry this is so long, we're doing ok now and Olivia's picking up

> a lot! Fever broke finally in the middle of the night, that really

> wiped her out too.

>

> Thanks again to everyone here in my wonderful " extended family " !

>

> Leah, mom to 10yrs

> Olivia 5 yrs, 11mths, 21 lbs, 36 " (lost a bit of

weight

> but not too bad)

>

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Leah -Oh I'm so glad things worked out for you and I'm so glad you

took her to the hospital. You know, Ian was spilling keytones while

on an IV at the hospital but after a few days had stable blood

sugars as well. We had him on D10 for 5 days. It definately made a

difference. I'm so glad Olivia is doing better. Thank you for

keeping us posted - we've been thinking of her lot's.

- Hugs

- H

>

>

> Hey all,

>

> Thanks for your thoughts and prayers. A very special thankyou

to

> Jodi Z. for the very consice wake up call. I hate it when

we " know "

> what to do but then second guess everything.

>

> We took Olivia to emerg at 5pm and we had a very positive

> experience there. We explained everything to the RN and she said

> she'd never heard of RSS so what's the protocol? We told her and

we

> weren't even put into chairs, whisked right back to the Dr. He

> seemed unconcerned that she was spilling such high ketones because

> her blood sugars were stable but I tried my best to explain that

it

> was very different from diabetes. I also had my big MAGIC library

> binder and gave them a copy of the RSS brochure, H-28 and a couple

> others. Half way through my explanation he said it sounded quite

> involved and since he'd never heard of RSS we obviously knew more

> than he did so asked for protocol again. Within a few min she was

> hooked up to a D-5 IV. He was very concerned that D-10 could

> skyrocket her too fast and I wasn't going to argue the point since

> he was going along with everything.

>

> He said she would be released as soon as she stopped spilling

but

> changed his mind when I said we're worried she'd be right back in

> hosp from not eating yet and unable to sustain herself.

> Would you believe he sat at the ward desk and read through all

the

> papers I gave him!? I was astounded to say the least!

> Anyway after 20 hrs gut rest Olivia was finally hungry! I had

> them turn the IV down to 5ml/hr and she did great.

> By the time we got home tonight she started spilling trace

ketones

> but I wasn't worried because I knew her appetite would be way

better

> at home than at the hospital.

>

> Olivia's already eaten 1/2 a jar of Country chicken caserole

> babyfood and 1/2 jar infant blueberries. I know, I know, it's

baby

> food, my mom hates that I still feed it to her but..... she LOVES

> it and it's all loaded with cornstarch so I figure, why not? It's

> also got to be tons easier to digest since it's made for babies

> which is good for a system that's been down. She's also had bites

> of a cookie, mini wheats, and a fruit snack. No ketones when she

> just went to the bathroom.

>

> Sorry this is so long, we're doing ok now and Olivia's picking

up

> a lot! Fever broke finally in the middle of the night, that

really

> wiped her out too.

>

> Thanks again to everyone here in my wonderful " extended family " !

>

> Leah, mom to 10yrs

> Olivia 5 yrs, 11mths, 21 lbs, 36 " (lost a bit of

weight

> but not too bad)

>

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Leah,

I'm glad that things at the hospital were so positive for you and

Olivia, but sorry that she got so sick that you had to go that route.

See what being an informed parent can do? Wow! Were you ever

prepared. I'm impressed.

I hope that Olivia continues to eat well and gets better quickly. It

really doesn't matter what you give her - baby food or not. As long

as she is eating, it's in her best interest. (As an aside, my 20 year

old daughter LOVES baby food bananas. While I won't buy them for her

anymore because she is working and can buy them herself, I don't care

that she eats them. Whatever makes her happy as long as it's healthy.)

Good job, Mom!

Jodi Z

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