Harlow update

[Guest guest]

I have been so busy of late, I really haven't taken the time to update

on the chaos that is our lives.

We have had nursing support for almost two weeks now. They've been able

to staff about 70% of the time so we've actually been getting some sleep

and I've been able to take care of myself and the other kids feeds

during the day without dealing with the whole KODY issue. We tried

(again) and failed (again) trying to give Kody enteral feeds (35cc/hr).

We rested him for a week and THEY aer now trying again, aiming for 1

oz/hr for 10 hours every OTHER day. I can't stand being a part of it

anymore, it hasn't worked in four years. It's even hard on the nurses..

just waiting for him to get sick. His doc really wants to do duodenal

manometry, though Dr. and another peds GI are against it. If he's

having a good day, it will be normal and nothing will be gained. We

also have to put him through moving his GT site, they want to surgically

close his existing tract and create a new one. tpn-wise he's doing

pretty well, liver values are up then down, generally everything looks

okay though. As the days, then weeks, now months tick by, we are coming

to the sickening realization that TPN is probably going to be permanent

and therefore a terminal situation. a sobering thought.

I feel great. My G tube is healing up; feeds are going well (though I

can't handle boluses either). I've lost most of the prednisone weight.

I can't describe how wonderful it is to not have to battle with NGs or

swallowing anymore. Should hae done this YEARS ago.

Korey (7) and Killian (2) love their G tubes. They are still a bit sore

but also thrilled to be off NGs. We've tried a few foods (rice and

corn) but they have had symptoms, so we're backing off for a week or so.

(11) is beginning to balk at the Necoate juice boxes. He is

BEGGING for a Gtube now. We'll do it in the summer.

That's it for now.