Kody

February 24, 2003

In a message dated 2/24/2003 6:24:49 PM Eastern Standard Time,

buttrfly@... writes:

> I have been thinking alot of Kody as we deal with

> impactions/constipation/partial obstructions constantly with and

> . When they are impacted it makes them feel incredibly sick. I

> have been thinking on how ill Kody must be feeling and hoping the meds

> have worked for him. Did they try clearing him out yet with a suppository

> like microlax?

>

Thanks . He does feel pretty awful, but then he is so used to awful

that he just plays anyway. He is complaining his tummy hurts. We tried the

suppository and it did nothing for him. ( I am feeling badly that it got

to this point without me knowing about it. You would think that he would be

just absolutely acting miserable and crying in pain, and yet he isn't and

hasn't. He did tell me quite frequently that his tummy hurt, but then he'd go

eat so I didn't think much of it.

Diane, Mom to Kody age 7, Di Syndrome, Hypogammaglobulinemia, Epilepsy,

Asthma, CAPD, VID, Developemental Disorders, also Proud Mom to Arika 15,

Kaila 11, and Sami 9.

Visit my website at: www.geocities.com/schmidtzoo/SNAK.index

February 25, 2003

Hi , Just wanted to let you know we have been through the Go Lytely with

our daughter twice for impactions. It works very well. Other than the NG tube

it is very tolerable. It took us 2 days to clear but she was a new kid after

we did. My daughter would never have allowed me to do enemas than anything so

we really did not have any choice. Just a bit of hope to make him feel

better. BARBIE

February 27, 2003

Actually, Diane now I remember that we did go-lytely for Lucas last year also

prior to some upper and lower GI testing under general anesthesia. We did

sedate both of them when we inserted the tube with Versed. I insisted. Both

of them did well as long as there was Nintendo that they played non-stop. I

do not remember either of them having alot of cramping. Lucas has chronic

bloody noses and is absolutely unwilling for anyone to go near his nose for

anything but he did well. Just expect that the weekend is shot and bring

along a book while they play nintendo. I am trying to remember if there is

anything else. BARBIE

February 27, 2003

Diane,

My thoughts and prayers are with you and Kody. What a brave kid. Hope he'll be

doing better soon.

Ann

February 27, 2003

Diane - how many cc's were each dose? I wouldn't hold out hope for any

movements tonight but maybe in the morning. Is he getting fluids? Do they

have him on a clear liquid diet? if he's on a regular diet then it still

produces even more stool and the cycle continues. Clear liquids work better

and the bowel can just focus on relieving what's already there.

Also getting up and walking the floor helps. We would walk in circles

through the halls, around the nurses station and back again. Mobility helps

motility. If he can sleep sitting pretty straight up the tube may not

tickle as much. I'm bad about playing with it with my tongue and gagging.

Weird I know.

Did they do an admitting xray? Will they do one every so often? Macey had

to have one before she was discharged to prove that she had gone enough.

She never did but she was so sluggish that the GI was concerned about over

doing the GoLytely and just went ahead and scheduled her colon button so

that we could start the bowel irrigations ourselves at home.

Good luck and update us often. Do you have the computer at the hospital?

Les bought a new one for us with the tax return so now we have one with a

DVD player and a faster processor. Macey's jazzed about her next infusion

so she can use it. Isn't that twisted?

Ursula Holleman

and Macey's mom (7 yr. old with CVID, Diabetes Insipidus)

http://www..com

February 28, 2003

In a message dated 2/27/2003 10:23:38 PM Central Standard Time,

uahollem1@... writes:

> Macey's jazzed about her next infusion

> so she can use it. Isn't that twisted?

>

Hee hee ( " twisted " )... thanks for the smile this morning! That is pretty

funny, just glad she can see the bright side of things.

(mom to Kate, born 9/19/02; and , age 4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

February 28, 2003

In a message dated 2/28/2003 6:16:28 AM Central Standard Time,

SNAKpackmomma@... writes:

> We are in the overflow wing since the ped's floors are full from kids with

> RSV

Diane:

I know it sounds silly but make sure you see everybody washing their hands

when they come in. I was amazed at how lackadaisical they were even on the

Infectious Diseases floor at Children's Memorial in Chicago. I mean, come on.

Prayers for Kody (and a few tears from picturing the tube going in)...

(mom to Kate, born 9/19/02; and , age 4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

February 28, 2003

In a message dated 2/28/03 4:14:48 AM Pacific Standard Time,

SNAKpackmomma@... writes:

> ct scan of Kody's abdomen.

Good, I think that's an excellent idea. Also think it's about time!!!! I'm

glad your night was okay--but you two must be exhausted. I was thinking they

should plan to start the Go-Lytely in the middle of the night, so you start

going during the day!!! Has his chest cleared any? Are you okay?

Sandi

February 28, 2003

I'm actually not sure how many cc's he gets at once...the bag says 800 cc's, but

since they are dripping it in through the tube he doesn't get all that at once,

they come in and change the drip from time to time. He is on a clear diet, and

they do have him hooked up to fluids too. He pretty much slept inbetween sitting

up. I am assuming they will exray before we go home, this is so new to me that I

don't know what happens next! LOL! I am sure that one of the peds from Kody's

doctors office will be doing rounds this morning and I will ask.

I did bring my lap top with me. Aren't they great? We are in the overflow wing

since the ped's floors are full from kids with RSV (like I want Kody exposed to

THAT! But they have kept his door shut constantly) and the tv's on this floor

don't have VCR's. So being able to watch DVD's on the computer has been

wonderful!! I'll let you know what happens next today. I will ask about another

exray for sure. Although I thought I overheard his doc on the phone talking

about a ct scan of Kody's abdomen.

Diane

RE: Kody