Re: 23 hr feedings - AMY

[Guest guest]

Hi Amy,

This is Pat, 's g-ma. is continuously fed via g-tube. This is

what we were told to do by Dr H herself! LOL is to be vented for a

full 15 min every 6 hours. If we have problems with gagging/retching, then

we are to move the schedule to venting for a full 10 min every 4 hours, with

additional venting for 5min with each gagging/retching episode. I've been

hearing wonderful things about this Farrell valve, and venting all night

long.

Dr H, also, told us that the cc/hr rate needs to be lower at night, and can

be upped during the day. currently runs at 33cc/hr from 8am-10pm,

and 25cc/hr from 10pm-8am. The highest we have ever been able to get his

night time feed rate is 28cc/hr. Anything higher and he is gagging/vomiting

by 6am.

A few questions. How much does Avery weigh? Who decided his cc/hr rate, and

how did they calculate it? For severely underweight children, Dr H uses

160kcal/kg, but that is graduated down as the child gains weight. is

currently on less than 100kcal/kg. Actually, got SO chunky, he is

kind of on a diet now! LOL Did Avery have a fundoplication when his g-tube

was placed? A fundo will help lessen reflux, but doesn't stop it entirely,

and can be common cause of the gagging/retching cycle. Is Avery on any

reflux reducing meds? These have really helped . He is currently

doing Prevacid in the morning, and Zantac at night. This regimen is working

a lot better than just Zantac alone.

As far as I know, it is not normal to have that much leakage from around the

button. It sounds like he has a lot of pressure in his tummy. Do you use a

pad/dressing to absorb any leakage? We use a pre-cut 2x2, and it works

great! When I have , I change this twice daily, and I think his mom

does it once a day. How much water is in the balloon for the button? Do you

check this regularly? leaks more when his balloon has deflated some.

It was explained to me that the balloon on the end of the button is like a

helium balloon. It is porous, and can lose water, just like a helium balloon

loses air. I check 's balloon once a week. It is usually .5-1cc low.

I extract all the fluid and replace it with fresh sterile water. We were

also told by Dr H, that the entire button should be removed once a month,

thoroughly cleaned, then put back in with fresh sterile water for the

balloon.

Lastly, it is absolutely possible to aspirate reflux. has done so

many times, and it has been party to the damage done to his lungs. I would

have him tested for reflux, and put on meds. This will greatly lessen the

chance of aspiration pnuemonitis.

Avery sounds so cute with the Bob, the Builder backpack on wheels! You

should post a pic of him with it. I would love to see it! Isn't it amazing

the way these kids adapt to life? dazzles us with his brilliance

often! LOL

Feel free to email me privately at pcpets@... anytime. I remember

how helpless I felt when B was having the same problems, and would love to

help.

Pat (g-ma to , RSS, 21.5 months, 19# 5oz, 29.5 " , Prevacid, Zantac,

Singulair, GT)