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Oct 13, 2008
jarenemum
Mom to 26 month old baby girl. Born at 33+weeks. Severe GERD, dysphagia (even to saliva), central hypotonia. Unable to do MRI due to requirement for G.A. and intubation risks. Docs mentioned chin is on small side which does not help with swallow. Currently 10.6Kg and 83cm long. Able to sit independently, pull to sit and sit up on her own. Able to stand with support and pull/push to stand. Can cruise. Started to crawl on April 1st 09. Babbles a lot but not saying real words yet. On early intervention programme. Communicates with a lot of gestures and finger pointing. Very intelligent. Swallow study done on 11/9/08 shows no initiation of swallow but is allowed to continue with food tasting which she thoroughly enjoys. Second swallow study done in Jul 09 shows she can swallow 2 teaspoons out of 4 tea spoons of yoghurt given. But it shows some muscle coordination issues between oro motor, throat and sphincter which causes food to queue up prior to entering stomach. Feeds through nasal gastric tube. On 3 times a week private speech therapy with vital stim since June 09 and once a week Physio with local hospital. We practice with her everyday on our own which saw more progress. Couldn't get into our preferred special school for EIP due to lack of teachers and long queue for spaces. Am looking for alternatives now.
g-tube babies
hi, am looking for more mum's with experiences to share on having a g-tube in place for their babies. I am considering for my girl but would like to hear more varied experiences so that i know what to expect. Thanks!
Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Here's a post I made lower eabout Jedd's G tube experience
for us the G tube was the best thing we have ever done, period. It helped to get rid of th eaversion partly. The tube it jsut ahrd on the swallowing patterns. We got the G in Aug. of 07. We have had it over a year now!!! Time flies!!!! I'd do it again, in a heartbeat, really. You are already doing the NG and the G is sooooo much easie rto take care of and since you already know how to run a pump the training is very simple.

Jed got a strat MicKey insertion so NO long tube for us. If varies from hospital to hosp. You can't request to have a straight insertion or even the other way around. Each hosptial does it there way. We just happen to have one that does straight MicKeys. We had NO choice on the type of button either.

Jedd was given a full dose of morphin in the step down unti prior to us gettign to our room for the night. That was all he needed for hard pain meds. Afte rthat we gave him reg. tylenol every 4 hours for about 2 days. After that he was fine and needed NO pain meds. Kids recover fast.

We had NG'ed for 8.5 months. For us that was about 6 months too long...LOL I wish we had done it sooner but we had a crappy GI at the time and he wouldn't put the referal through to surgery.

we wnet home the day after the surgery. Jedd was still not tolerate any feeds at that pint unless they wer econtinuos feeds with thepump of pedialtye. After about 2 days we wer eable to do continuos feeds of formula. It tok about 4-6 weeks to tolerate his boluses again. Which for him was about 2-2.5oz every 3 hours and around 37 CC at night for 10 hours.

We never made it back up to pre-G tube boluses or continuos. This is an issue with gettign a G. Alot of kiddos see a flare and then it back down to normal and they can tolerate feeds just fine. Jedd wasn't one of those kids, sadly.

Orally he tolerates MUCH more at a time. He can take 8oz of food/milk mixed in one feeding session. It' sjust the un-natural stretching of hsi belly he can't tolerate.

Here is my Myspace account, I ahve picutres in their of Jedd's G surgery. You can obviously tell he is NOT in pain. Warning!!!!! He is pink in skin color. He reacted to Robinol in his sedation cocktail. It is a normal reaction that lots of kiddos have iwth that drig. They will still use it agin, if need be. It wasn't threatening or anyhting. Jsut makes the kid turn red/pink....LOL

http://www.myspace.com/theonionjewell

You can also view alot of pictures here as well!!!!!

http://www.parent-2-parent.com/forum/showthread.php?t=89713

I am a pretty active member of that forum...LOL I bounce back and forth between the two!!!! Some of the picture may be protected and you may or may not be able to see them unless until you join. It's for our kiddos safety. Let me know if you can't see them there. I can link to a differnt post.

Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
hERE'S THE LINK TO THE THREAD i WAS TALING AOBUT WHER Ei COPIED AN DPASSTED....

http://www.reflux.org/reflux/webdsc01.nsf/vwID/VASV-7KCJQS?OpenDocument

Sorry it's in caps I din't want to retype I'm havign PAGER issue this AM.

Oct 13, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
For us, getting the g-tube was the best thing we could have done for Quinn too. Although she still ate by mouth, she was so terribly sick all the time that she would go through intervals of not eating at all, becoming so dehydrated and needing hospitalization. She was also a bit lower on the calorie count and of course a FTT child. Quinn was 15 or 16 months old when she got her g-tube placed. It has made a tremendous difference in her overall health. The surgery itself was ok, but recovery was a bit hard for her. As for me, the sight of it almost made me sick at first. It doesn't look great, but you get used to it. After she came out and I looked at her and that tube in her belly, I had so many second thoughts running through my head, "did I do the right thing?" "I wonder what they would do if I told them to take it out now" "what have I done to my baby?" Quinn got a PEG tube at first. IT is a longer tube that sticks out, not like the mic-key button. Quinn needed a lot of IV pain meds throughout the night and early morning the next day. Despite the severity of her reflux, I felt that trying the g-tube first before the nissen was better, but I was wrong. The first feed she got, she threw up all over the place. She was in more pain and she still ended up hospitalized, though not as often because we were able to keep her better hydrated. She stayed in the hospital for five days after she go her tube put in due to the feeding complications. She couldn't tolerate any more than a continuous drip of 60ML per hour and she she basically wore a pump around everywhere. She ended up in surgery a few months later for the nissen fundoplication and things got way better after that. -Sarah
Oct 13, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
Photobucket The picture below is a month or two after the g-tube placement. She had the PEG, so it just hung around so we put this netting around it to keep it in place when she wasn't using it. Photobucket
Oct 13, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
By the way, the PEG tube sucks. We hated it. It always caused her problems. She actually ended up back in the hospital almost two weeks after she got her tube in for a really bad g-tube infection. Her site was literally purple! when they put the mic-key button in, things got better, but she was still always getting infected and finally, they put in a different button called the AMT mini non-balloon button and things got WAY better! I think she was just allergic to the plastic or something on the mic-key... or it could have been the balloon, but she suffered from the mic-key pain for almost a year. She wouldn't even tolerate tummy time because of the mic-key. She was so protective of her mid-section, which didn't help with tone build up. and now she does great in therapy.
Oct 13, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
I dont have a lot of time, but it was the best thing we ever did for our son. He had it done while he was in the hospital having his fundoplication, prior to that he was fed with a nasogastric tube. He had an open surgical placement, the mickey was placed immediately, some surgeons place a long peg tube and then switch to a button after the tract has healed. He stayed in the hopital over a week afterwards, but also had another surgery and some complications. He didnt tolerate feeds, and he still doesnt, he is continuously fed 24 hours a day, but he has some other issues. Here is a pic...The stitch under the mic-key has nothing to do with the tube insertion, it is anchoring the stomach in place so he didnt reherniate, he had a very very bad hernia repaired. Photobucket
Check with your
doctor first!