Re: Wombat's Surgery

[Guest guest]

,

I don't know if it is too early to see the orthofacial specialist,

but why not see if he/she can stop by and see Connor while he is in

the hospital?

As for 72ml/hour at night, never even approached that. He can

do it during the day for an hourly bolus, but at night he never got

over 50ml/hour without gagging which would only blow his fundo.

Good luck,

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

mary,

connor will be in my thought and prayer. i hope this will get the inteke he

needs and will help him to be well on his way

cara mom to jacob

Kearns wrote:

Hi All!

Tomorrow (10:30 EST), Connor will have a g-tube put in to assist in

catch up calories at night. Our family would covet any praeyrs or

warm feelings sent his way.

Thank you to all who responded or called me regarding " The ABC's of

a g-tube. " I appreciate the time and effort you put into each post.

The freinds we have made on this list serve and at convention are

what keep my sanity intact when faced with yet another, RSS curve

ball.

I have to admit, two days ago I was getting cold feet regarding his

surgery. I thought that I was yet again, over reacting to his

syndrome. Well, we took him in for another weight in. He's down

another pound to just about 19. As much as I pour into that little

guy, it's just not registering in him. At this point, the

nutritionist want's to get 72 cc's an hour into Connor at night. Is

that realistic? I'm so new at this I simply don't know. The

equivalent would be 3 cans of Pediasure in one night. Presently, he

takes 3 cans over a 24 hour period plus his oral feeds. He's on a

vanilla pudding kick right now and I've been adding a teaspoon of

flax seed oil to boost calories. As more teeth come in, the

malocclusion of the jaw becomes more of a problem. It's just to

painful for him to chew. So, when do we take him to see the

Orthofacial specialist? Can you do anything with the jaw when they

are this young?

Ugh. I need to go pack. All the Teletubbies will be assisting us

in the hospital and God help me if I forget Barney!!!!

Mom to Graham 8 ADD; Cameron 5; Connor IUGR RSS Kyphosis G-Tube

Periactin, Prevacid, Zantac, GH in two weeks.

[Guest guest]

,

I will certainly be thinking of you and Conner tomorrow morning. I

know how scary it all is - and then all the questions and

nervousness and worrying about how to handle the machinery and

bags... But just take things one step at a time and it will all be

okay. There are certainly enough of us on this listserve who have

this experience and can help you out.

In the beginning, you will not be running the pump at full speed.

You will start out really slowly and then slowly build up. Even

when Max has been sick and we needed to use the pump, we start out

at 20cc/hour and don't move up for a minimum of 4 hours - and that

is only increasing by 5cc's each time. You will certainly have to

go at a lower rate for Conner. Do NOT ramp it up too quickly or you

will have problems.

When Max first had his g-tube placed, he walked around all hunched

over. People told us he would not be in pain, but he was. We

called him a Grumpy Old Man because that movie had just come out.

Do not let them tell you that Conner is not in pain or that he can

deal with it on his own. There have been many studies lately of how

important pain control is for recovery.

Let us know how things go. I'm sure they will run smoothly. Oh -

and as for the 72cc/hour, forget about it. Max still cannot

tolerate that rate and he is 16. (Of course, we don't want to EVER

use that tube again!)

Jodi Z