g-tube question

[Guest guest]

For those of you who have children with g-tubes - what was the

reason for the g-tube? Did any of your kids require it because of

dysphagia? If so, what were things like when your child got the g-tube

- how bad?

Jericho's primary care dr said earlier this week that he wants

another swallow study to see just what Jericho *is* able to handle at

this point. That was sobering. I had expected he just wanted to see if

aspiration was the problem or not, which seems to have been pretty well

established. But he thinks Jericho is probably silently aspirating,

even with thickened things. He said, " some of these kids need

g-tubes " . So he has joined most of Jericho's other doctors and

therapists on that one.

I left his office thinking that we had been experimenting some, and

taken his drinks down to honey consistency, so we just needed to go back

to halfway-between honey and pudding again. Then he would be fine. And

he did seem to do a little better that day.

Then the next day I noticed him having trouble with his yogurt - in

the morning, and in the evening. And yesterday, the same thing.

Coughing a little while eating it - in " that " cough, the

wet-in-the-airway-cough. And then rough-sounding breathing afterwards,

and thick coughing starting 30-60 minutes after, as well.

Last night after he was asleep, I checked with a stethoscope, and he

again had pockets in his right lung that weren't getting any air. As I

listened, he would get gurgly sounds, and then a little bit of air would

start getting through to that pocket, then more gurgly sounds, then a

little more air. In the end his whole lung was getting air, but still

not as much as the left side. This morning it's still getting less than

the left side. I'm sure that will change after he has been up for a bit

and coughing again. Then his lungs will probably be clear until close

to bedtime again.

He has been much worse in the last month so I'm not terribly

concerned. But I am a little down. He shouldn't be having ANY coughing

or rough breathing or pockets not getting air, or differences in his

lungs, at this point. His lungs were in better shape a few days ago,

before we made the diet changes!! And yogurt??? He even had trouble

with a bite of his pizza last night, and has had some coughing after

drinking his very thickened drinks (but only a couple times).

The other issue is that he still isn't drinking enough. He is

supposed to be getting 40 ounces a day at a bare minimum, and 50 ounces

a day as a regular maintenance amount - at a minimum. He probably gets

20-30 ounces per day, if you include all the yogurt he eats. He is

still urinating twice a day though, and his lips are dry and peeling but

not cracking or anything, and his eyes don't look sunken or anything.

He still has tears when he cries. But this is the amount of fluids he

has been getting for 3 months now, and he has been tired and cranky this

whole time - which is really unlike him.

He goes to the dyphagia clinic on the 21st, so I figure we have

until then to get him in better shape. But if he is having trouble even

with very thickened stuff, and yogurt and pizza - well, what exactly do

we feed him now??

I know he will almost certainly need a g-tube eventually. But he

does not look like a failure to thrive child. He is falling on the

growth charts but not horribly - only 15-20 percentile points in the

last year. It just seems like he ought to be able to get through this

episode without a g-tube.

Lynne