Re: [GT] Frustrated

[Guest guest]

Lucas made it through the night but seemed a little

out of sorts this am. We turned off his feedings at

5:30 so when we got him up at 7am he did not vomit.

When in radiology they had him in there sterile room

and therefore I had to stay in the waiting room. They

put a 14 french tube in as for the outer tube. He was

leaking with a 16 french and 8 cc's in the balloon.

When we got home his split sponge was a little damp

and we had not started his feeds. Hopefully something

good will come out of this experience. Loriann

--- Loriann Melby wrote:

> Just had to complain about my experience this

> evening.

> Lucas who is 8 years old and J-J tube fed at about

> 6:35 pm tonight pulled out the inner part of his

> J-tube. I was just about to get dressed and head to

> work. (Ended up having to call in.) Instead I ended

> up

> spending over an hour on the phone only to find out

> the radiologist, even after receiving a call from

> Lucas' pediatrician, refused to put the tube in

> tonight. I had asked the genetic counseler a few

> weeks ago to get a protocol letter from the

> geneticist

> for these type of events. I was told that it would

> have to be made especially for him. The geneticist

> is

> out of town for the month (Hawaii I believe). Lucas

> has a mild defect in fatty acid oxidation

> specifically

> thought to be a LCHAD. This means that fasting is

> not

> an option for him. Lucas had a J-J tube designed

> since his feedings pool and leaked when he had a

> Mic-Key button. Currently he has 8 cc's of fluid in

> his balloon and we must tape around the tube and

> replace it every couple of days to keep the balloon

> tight to the stoma. Well we had to decrease his

> rate

> from 80 down to 70 cc's per our pediatricians

> direction and hope we wake up with the majority of

> our

> tube feeding in instead of irritating his stoma.

> Lucas also has nearly 15 hours of venting into a leg

> bag of his G-tube since he has periods of gagging

> and

> vomiting without it. We vent over 200 cc of gastric

> fluid and saliva per day. The GI drs. feel he has

> reverse peristalsis besides reflux, and impaired

> motility. The radiologist nurse felt it should have

> been done but the radiologist would not budge. Not

> sure why he wouldn't do it this evening and instead

> had to wait until the am. The only thing he said

> was

> that it was protocol to wait if the child is over

> the

> age of 1. My son has never gone by the book. Noone

> can really explain why at the age of 4 he developed

> delayed gastric emptying and had to get a J-tube to

> begin with. They can't explain why about a year ago

> we tolerated G-tube feedings for 2 months and then

> started vomiting formula. Makes me very upset that

> a

> radiologist can decide he knows better than my son's

> pediatrician. Will let you know tomorrow what

> happened during the night. Sure hope that he

> doesn't

> suffer any setback during the night and his stoma

> remains well.

> Loriann- mom to and 12 yr old twins and

> Lucas 8 yrs. old with suspected mito disorder, mild

> defect in LCHAD, J-tube fed, impaired motility,

> ataxia, hypothyroid secondary to pituitary

> malfunction, global developmental delays

>

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