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Forum: FTT and Weight Gain Issues

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  #1  
March 18th, 2011, 06:09 AM
Ditzzy's Avatar Stupid Lamb;)
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Has your child ever had surgery?
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  #2  
March 18th, 2011, 06:43 AM
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He hasn't had major surgery but he has had...I think it is 10 now....endoscopies with biopsies (one with a ph probe and two with pancreatic function tests) and one colonoscopy.
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  #3  
March 18th, 2011, 08:10 AM
BusyMom4's Avatar Veteran
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Brandon (who is no longer FTT but was until 2 years old) has had his tonsils and adenoids out and 2 sets of ear tubes placed. Nyla has had her tonsils and adenoids out, a dental surgery, and a sinus surgery all of which she had to go under general anesthesia for which is very risky for her due to her lungs. Hopefully she doesnt need any more surgeries!! After her last surgery she had an episode with her lungs due to the anesthesia that kept us in recovery for 6 hours. It was a bit scary.
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  #4  
March 18th, 2011, 09:37 AM
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Ava has had almost 30 and we know she'll need more in the future. She's had 3 MLBs, airway reconstruction, endoscopies, colonosopy, Gastronomy/PEG placement, GJ Tube placements ,thigh muscle biopsy, polysyndactyly repair, stomach surgery to remove necrosis, flex broch with lung lavage, PE tubes, liver biopsy, etc...

This doesn't include picc lines, Interventional radiology, LPs or CT/MRIs. It never ends, does it?
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Last edited by Ditzzy; March 18th, 2011 at 09:39 AM.
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  #5  
March 18th, 2011, 01:20 PM
daysfancarlymanning's Avatar Super Mommy
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we are facing endoscopic surgery possibly. The closest she has come yet is the spinal tap and I know that isn't surgery but it was terrifying. She has had procedures, like u/s and upper gi's but now we're doing the sweat test next week and then probably the endoscopy biopsy. Ava is brave I couldn't imagine over 30 surgeries. What a trooper. And all of the other lo's too. You amaze me with your strength ladies. I don't know how you do it. I guess you just do what you have to and don't know any other way
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  #6  
March 18th, 2011, 04:25 PM
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I don't know what they normally do for an endoscopy or colonoscopy but Danny has to have general anesthesia with EVERYTHING because of his egg and soy allergies. The last endoscopy he had issues for a while and we were in recovery for a while as well. He was satting in the 80s after the anesthesia. That was the only time he has had problems with it but his breathing has also gotten a lot worse over the past 8 months. I am hoping that we won't have issues with anesthesia in the future....
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  #7  
March 19th, 2011, 10:19 AM
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Anesthesia is so scary. The respiratory therapist always comes in to speak with us before she goes into surgery and he told us that the kids who are highest risk of complications with anesthesia are those born premature and those with long standing lung issues. Nyla has both. They always give her albuterol pre-op but sometimes its not quite enough. After her last surgery her heart was racing and she had an asthma attack but they didnt want to use any more albuterol because her heart was already racing and albuterol would make it worse. The RT said it wasnt unexpected in a child with her history, but it was still scary. They kept her on oxygen and monitored her and were prepared to use IV drugs if necessary.

We avoid anesthesia at all costs with her unless there are no other options LOL. Its just too risky. I just hope she outgrows this someday.
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  #8  
March 20th, 2011, 09:12 AM
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Ava's problem is her airway. She was born with an airway that collapses on itself, so she had airway reconstruction. We always have to have anesthesia consults appts before any surgery and she has to be intubated through her nose. She's given steroids and abx for every surgery. It's an ordeal. She has acquired subglottic stenosis from repeated intubations. I understand the worry!
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  #9  
March 28th, 2011, 06:07 AM
Crystal1972's Avatar Super Mommy
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Jaylyn is FTT, she has had several surgeries. She was born with EA/TEF and it was repaired at 3 days, she has had multiple dilations to her esophagus, 2 endoscopies/biopies/ph probes, and she will be have surgery April 7th for the Nissen Fundoplication, Hiatial Hernia repair, and a G-Tube. She is 21.5 months and weighs 16.1 lbs and 28".
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