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Old 03-04-2009, 06:41 AM
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Default Stoma Closure - naturally or surgically

It has almost been 3 months since Isabelle has been decannulated and the stoma doesnt look anywhere near closing. I keep a bandage on it and take it off to air for an hour each night. Our surgeon says he doesnt close stomas until 6 months. We cant keep it open until next summer so were hoping to get it done before winter comes upon us April/May?June. Hate for her to get RSV in the hospital. We have a meeting with the surgeon in a few weeks time for a plan.

How many of you have had it surgically closed and what does it involve. Do they stitch the trachea closed then bore the neck skin so that there is a wound to heal? How long in hospital? Does it leave a huge scar, How long in hospital?

Hope you can shed some light for me.
Tracey
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Mum to Isabelle - born 13 June 2006 - 24 weeks 5 days - weighing 695gms. Subglottic Stenosis (aquired - 2 stage LTR done in Feb 2008), PDA (surgically closed), Secondary Pulmonary Hypertension (being treated with Viagra!), Chronic Lung Disease decannulated December 08, stoma closure Feb 09
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Old 03-04-2009, 08:21 AM
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Sam still has his trach, but we have been told that he will need stoma closure surgery about 6 monts after decan (he has had his trach for over 4 years so the stoma doesn't close). I think different surgeons use different methods of closure but sometimes some 'tidying up' is required later.

Julie
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
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Old 03-04-2009, 10:49 AM
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My son had his closed by Dr. Cotton in Cinci. Basically, they just 'cored out' his stoma to make the edges a fresh wound. It then healed from the inside out. It looked horrible at first, but within weeks it was completely closed and pretty much healed. He had very little pain and we went home the next day.

Here's a photo:
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Dawna, Mom to Tristan 6 yrs, former 22wk preemie with trach (decanned 6/20/07!!), Josh 25, Jenna 21, Gracie 14, and Jon 11.
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Old 03-04-2009, 11:25 AM
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My son's stoma closure is scheduled for this Friday (3/6) at CHOP with Ian Jacobs. He was decannulated 6/15.

Dr. Jacobs does it differently than the folks in Cinncinati. He closes each layer, to the trachea, and then leaves a nice small scar line in the lower neck (almost like plastic surgery). He does not leave that open wound. I'm told that once its done, you wouldn't even know it was there w/o a trained eye.

His partner, Karen Zur - who trained with Cotton, closes it the "cinncinati" way (or so I understand).

I will try to post a photo of Connor after Friday (of course he's been healthy all winter but woke up this past Sunday with a cold and now we're trying to fight it off before Friday - we'll see).
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Last edited by connor'smom : 04-29-2011 at 11:24 PM.
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Old 03-04-2009, 11:45 PM
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Ayden's trach came out in Aug, so we were going to wait through the winter. Our ENT said if it doesn't close in 6 weeks, it won't close. I believe the wait is b/c of having to intubated for the closure surgery. Our ENT actually will do some plastic surgery to make the stoma look better.
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former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -
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Old 03-11-2009, 06:04 AM
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Just wanted to bring this back up to the top of list. I read that Connor had his closed last Friday - looks great.

Any more comments please???

Tracey
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Mum to Isabelle - born 13 June 2006 - 24 weeks 5 days - weighing 695gms. Subglottic Stenosis (aquired - 2 stage LTR done in Feb 2008), PDA (surgically closed), Secondary Pulmonary Hypertension (being treated with Viagra!), Chronic Lung Disease decannulated December 08, stoma closure Feb 09
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Old 03-11-2009, 03:20 PM
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Kate's stoma closure is scheduled for April 24. Dr. Jacobs will do the procedure -- he did Connor's as well, so I'm expecting the same thing. Her stoma is as open as it was the day she was decannulated. here's a pic of her from Sat. She's been decanned since last July. We're anticipating 1 night in the PICU, then home.

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Old 03-11-2009, 05:01 PM
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Alex's little friend Nathan had is stoma closure surgery last August. It was an outpatient procedure. He had his cored out.

Here is what I know from watching them struggle with it. The local ENT was extremely reluctant to close the stoma. He refused even after the pulmonologist following Nathan said that it was obvious it was not closing all the way. Instead, another ENT that usually does not deal with pediatric trachs did the surgery. (He does do trachs, not usually pedes, though.)

We see (or saw) all of the same docs that Nathan saw. They were explaining to both of us that a natural closure is best because it is the least amount of risk. First, no sugery, and second, there is no risk of air trapping. (Even when they did Alex's LTP, they were worried about air trapping and left a drain in place for several days to help.) Air trapping is a serious concern, so many ENTs don't want to risk it.

I understand that the coring procedure has less risk of air trapping because it basically removes the skin that has grown in and holds the stoma open and allows for a natural close.

The "layer by layer" closure is what Alex had done with his LTP. It is a surgery that takes skill, but I am confident that in the right surgical hands, it is safe. I would want it done by a surgeon that does it often, not occasionally. I would also want it done by someone who does LTPs, I think, because they are very used to having to suture stomas closed. (They have no choice with single stage LTPs.) Ian Jacobs is a good example of someone I would trust to do this sort of surgery if it were necessary.

I hope this is a bit useful to you. We looked into it awhile back before we knew about Alex's LTP. We looked into it again when Nathan had his surgery because we were annoyed and confused at the first ENT's reaction.
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Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/

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