Re: Questions--long

[Guest guest]

Evan had his G-tube/Nissen done when he was 2 months old. I am in agreement

with W in that this was the best decision in terms of improvement of

quality of life. He's been home with us for 2 1/2 months now, and I don't think

he would have left the ICU much less the hospital without it. Before the Nissen

was done, Evan was only out of the NICU for one day (a miscommunication during

hospital transfer, that had disasterous results--he coded in the middle of the

night and had to be intubated and taken to the NICU where he should have been

taken in the first place...but I digress).

From birth, Evan had lots of issues with swallowing/handling secretions and

was constantly having desaturations. We were told initially that he would most

likely need a tracheostomy, but we had to wait for him to grow before making the

final call on that procedure. At about 6 weeks, the Drs discovered that he had

a hiatal hernia (stomach through the diaphragm) & some reflux, but this was

presented as something that while inconvienient in terms of keeping NJ tubes in

place, could be fixed later.

It wasn't until he was transferred to Children's Hospital in Seattle and had

an ENT consult that the great importance of his reflux and the hernia was

realized. His trachea was swollen from being constantly bathed in stomach

acids, but it was not floppy so the trach was not recommended. He had several

fluroscopy studies and upper GIs, but because the hernia would slide, on reveiw

of the tests he never looked " that bad. " But he continually would

reflux/vomit/desat. In the end, a surgical consult was ordered and the Drs.

decided to go ahead with repair/Nissen/G-tube.

We were told that the procedure wouldn't completely cure the desats, and of

the only 85% sucess rate of the Nissen. For me, the 15% failure rate was a risk

worth taking. There was just no other way for Evan to come home. Everything

was done at once to minimize the number of times he would have to go under

general anesthetic. If your son is not having all of these issues, it would be

a harder decision to make.

After having the procedure, Evan's number of desats significantly improved.

He still has some due to central apnea, and from accumulated

secretions--Caffeine, glycopyrulate, suctioning, and a small amount of oxygen

have helped to the point that I would say he only has maybe 1 or 2 desats per

day now (mostly only low enough to alert the monitor, and then back up). The

g-tube has enabled him to get enough nutrition to finally grow. The only

disadvantage of the Nissen we have found so far is that his stomach size is

pretty small. We still have to give him most of his feedings continuously at

night. We haven't had much success going to bolus feeds (and have found out the

hard way the consequences of too much too fast!).

Anyhow, this was a bit long.

(mom to CHARGEr Evan, 5 1/2 months, 3 1/2 adjusted)

erin32573@... wrote:

The doctors at Childrens have mentioned that if they need to do the g-tube

that they will want to also do the Nissen procedure for JD. He is not refluxing

his feeds at all. They are a little concerned about swallowing problems

because he had a Tracheal Esophageal Fistula which was repaired at 9 hours after

birth. Currently he is feeding orally through a gavage tube oral since he cant

do it via the nose because of the choanal atresia.

What is any of your experience with the Nissen? Is it successful? Any info

anyone could have would be appreciated.

Thanks,

and Mandy Parents of JD (3 1/2 months)