chrystine released from hospital

August 20, 2006

On Friday, Chrystine was enduring her physical therapy. She was miserable,

and I was encouraging her to keep it up, clapping for her (which she LOVES).

Chrystine will be sitting and get so excited for herself that she will try to

clap and topple over... it's the most adorable thing.. anyways, back to

story. I started noticing after her visit that she had no energy... kinda

typical,

but also not. She has had this obsession for ice water for about a month

now, which I thought was cute at first and was thankful for because it was

something she accepted orally. She can barely hold her head up, but she was

diving

for my glass of water last Friday. I started to get that feeling inside that

we get-something's wrong. I called the doctor and said I feared she was

dehydrated. (she is being j-fed at night, but still vomiting quite a bit daily)

By the time I got her to the hospital, my radar was going off big time. She was

almost lifeless except her eyes barely opened. I banged on the triage door.

Heart rate-198. Blood pressure 120/98-(kidney disease is the culprit-as soon

as she is ill, the hypertension... ) Her bloodwork showed a glucose level of

30. And CO2 level very low too (also kidney disease-has to go back on bicitra

cause she gets in this acidic state if she is sick). Chrystine was started

on glucose iv and by midnight, glucose still hadn't risen. So they started to

amp the amount, next check was over 300. Then they took it from her and it

dropped back down to 33 (about 5am Saturday morning). Finally, they found the

right amount she needed... and a diagnosis is in the works-either diabetes or

something about growth hormone, and I was told she will need shots for this,

anyone have any info? She was released late last night, and I have had to

prick her finger already this morning and her level was normal.

thanks for reading...

chrystal

arleigh (almost 4) and chrystine (almost 10 months CHaRGE)

August 20, 2006

Chrystal-

I've got no information to add. But what a scary experience for you! And

what a strong reminder that our instincts need to be heard and acknowledged.

Sometimes when life is very busy, I don't pay attention to my instincts and

things get missed.

I hope the dx is something manageable that doesn't add too much stress to

your already busy CHARGE days.

Michele W

Aubrie's mom

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

CJCRITES@...

Sent: Sunday, August 20, 2006 9:28 AM

To: charge

Subject: chrystine released from hospital

On Friday, Chrystine was enduring her physical therapy. She was miserable,

and I was encouraging her to keep it up, clapping for her (which she LOVES).

Chrystine will be sitting and get so excited for herself that she will try

to

clap and topple over... it's the most adorable thing.. anyways, back to

story. I started noticing after her visit that she had no energy... kinda

typical,

but also not. She has had this obsession for ice water for about a month

now, which I thought was cute at first and was thankful for because it was

something she accepted orally. She can barely hold her head up, but she was

diving

for my glass of water last Friday. I started to get that feeling inside that

we get-something's wrong. I called the doctor and said I feared she was

dehydrated. (she is being j-fed at night, but still vomiting quite a bit

daily)

By the time I got her to the hospital, my radar was going off big time. She

was

almost lifeless except her eyes barely opened. I banged on the triage door.

Heart rate-198. Blood pressure 120/98-(kidney disease is the culprit-as soon

as she is ill, the hypertension... ) Her bloodwork showed a glucose level of

30. And CO2 level very low too (also kidney disease-has to go back on

bicitra

cause she gets in this acidic state if she is sick). Chrystine was started

on glucose iv and by midnight, glucose still hadn't risen. So they started

to

amp the amount, next check was over 300. Then they took it from her and it

dropped back down to 33 (about 5am Saturday morning). Finally, they found

the

right amount she needed... and a diagnosis is in the works-either diabetes

or

something about growth hormone, and I was told she will need shots for this,

anyone have any info? She was released late last night, and I have had to

prick her finger already this morning and her level was normal.

thanks for reading...

chrystal

arleigh (almost 4) and chrystine (almost 10 months CHaRGE)

August 20, 2006

Chrystal,

I am glad you got some answers and I hope she is better soon. Poor

little girl!!!

Give her a hug for me and Eva.

Crystal mom to (10), (3), and Eva (16 month old CHARGEr)

wife to Dan

>

> On Friday, Chrystine was enduring her physical therapy. She was

miserable,

> and I was encouraging her to keep it up, clapping for her (which

she LOVES).

> Chrystine will be sitting and get so excited for herself that she

will try to

> clap and topple over... it's the most adorable thing.. anyways,

back to

> story. I started noticing after her visit that she had no

energy... kinda typical,

> but also not. She has had this obsession for ice water for about

a month

> now, which I thought was cute at first and was thankful for

because it was

> something she accepted orally. She can barely hold her head up,

but she was diving

> for my glass of water last Friday. I started to get that feeling

inside that

> we get-something's wrong. I called the doctor and said I feared

she was

> dehydrated. (she is being j-fed at night, but still vomiting quite

a bit daily)

> By the time I got her to the hospital, my radar was going off big

time. She was

> almost lifeless except her eyes barely opened. I banged on the

triage door.

> Heart rate-198. Blood pressure 120/98-(kidney disease is the

culprit-as soon

> as she is ill, the hypertension... ) Her bloodwork showed a

glucose level of

> 30. And CO2 level very low too (also kidney disease-has to go

back on bicitra

> cause she gets in this acidic state if she is sick). Chrystine

was started

> on glucose iv and by midnight, glucose still hadn't risen. So

they started to

> amp the amount, next check was over 300. Then they took it from

her and it

> dropped back down to 33 (about 5am Saturday morning). Finally,

they found the

> right amount she needed... and a diagnosis is in the works-either

diabetes or

> something about growth hormone, and I was told she will need

shots for this,

> anyone have any info? She was released late last night, and I

have had to

> prick her finger already this morning and her level was normal.

> thanks for reading...

> chrystal

> arleigh (almost 4) and chrystine (almost 10 months CHaRGE)

>

August 20, 2006

Hello;

When I was ten years old, I was still tube fed, and didn't swallow a lot of

water, only about a syringe full at a time, broken down throughout the day. We

went to Florida for a week in late July, and I started getting tired, wouldn't

want to walk, and just wanted to sleep. Mom knew something was wrong, and every

time she put a syringe of water in my tube, I would perk up for a short time,

and she realized I was dehydrated.

For a long time I couldn't tell, and my body wouldn't tell me when I was

dehydrated until later on, but when I started to orally drink regularly, it took

about two years before my body could tell when I was dehydrated, and when I

could tell and do something about it.

When I was over at and Kennedy in July of this year, I noticed that every

time Kennedy was fed she was also given a syringe of water at the end, and I

think that's a great idea, for every feeding give them a syringe of water or

more, not only to flush out the tube, but to keep them hydrated.

Just a thought. I could be wrong, and it could be something else.

Sincerely yours; Krista. 27 years old CHARGEr.

CJCRITES@... wrote:

On Friday, Chrystine was enduring her physical therapy. She was