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Old 05-03-2007, 08:15 PM
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suzanne2545 suzanne2545 is offline
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Default Granuloma Removal Procedure Questions

For those who have not read my other post: Parker was NOT decannulated today. He has developed a granuloma above his stoma. The ENT debated removing it today but decided against it because he said it had an unusually large area of attachment to the airway. The way he described it was that usually granulomas are attached at such a small point that they can "almost" be flicked off. Given the size of the area of attachment he was concerned that the combination of the larger scar tissue in conjunction with the still flexible airway in a baby Parker's age would mean that he would need to stay trached anyway. He said that when he indrew a breath the combination of the flex of his airway and the size of the granuloma didn't leave adequate airflow to breathe.

HIS plan is that Parker needs to either get big enough that there is enough flow to breath around the granuloma. OR wait until his airway isn't flexing so much which he said would be around one year of age.

We adore our ENT but we really feel we should consider a second opinion on this. First place I'm going for second opinions is here.

It has been suggested that an alternative methodology would be to take the granuloma off in stages to see how he responds. Has anyone done or heard of this?

Are there other theories? Thoughts. Things I'm missing?

Would you get a second opinion? Is this something to talk to Dr. Cotton about? Or would it take so long to get in there that he would be one year old anyway?

We aren't sure where to go from here or if we even need to go anywhere. Would greatly value any and all opinions.

Thanks, SUzanne
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Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: http://www.mylifewithboys.typepad.com Parker's LTP Blog: www.parkersplace.wordpress.com
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Old 05-03-2007, 08:28 PM
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I always feel like an idiot when I google something and end up right back on this site. Kudos to Cindy for that! Too bad I'm not smart enough to search the site first!

So:

"In such cases, "surgical decannulation" may be necessary. This operation involves placing a breathing tube (endotracheal tube) through the nose or mouth after removing the tracheotomy tube, removing the skin lining the path of the tube, removing the granuloma, and then suturing the collapsing front wall of the trachea forward to allow healing of the tube site. The patient is kept in an intensive care unit, and the endotracheal tube is removed after a day or two. "

Is Parker just generally too young/tiny for this type of procedure? He is six months (yesterday), developmentally age appropriate, off the charts for height and 50th percentile for weight.

Am I overreacting at the prospect of waiting another 6 months for decannulation?

Suzanne
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Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: http://www.mylifewithboys.typepad.com Parker's LTP Blog: www.parkersplace.wordpress.com
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Old 05-03-2007, 09:39 PM
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Kaylie Kaylie is offline
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Hi,
my grandaughter has had granuloma removals and so has Ketura, im sure other ones as well but those are who pop into my head right now. Kaylie had 100% blockage of her airway.. originally the DR said she would probably remove in sections because to remove it all at once may cause more problems.she also said she had to get in there and see what it looked like, no one knew it was occluding her airway that badly. we originally had another Dr and he was suppose to remove it and could not get block time and the equipment needed to proceed, so we had to look for another Dr and wait for a appointment, it was about 3 months later before we got another Dr and the granuloma went from 60% to the 100% they sometimes tend to grow rapidly. it definetly impeeded trach change and we had a few times were we could not get the trach in and had to start going weekly to the Dr to have it changed and we even had a Dr tell us that he did not want the responsibility doing it if he could not get the trach in.. we had quite a big ordeal all over this granuloma...if i would of known then what i know now about how quickly things can change i definetly would have demanded more that what took place.. almost every child with a trach will develop granuloma somewhere, most cause no problems and most Drs want to wait until its closer to decan, but there are granulomas that cause problems and impede the trach airway and trach changes, those are the ones were you need aggressive treatment. going in stages is ok if thats what needs to be done.. is the plan to do laser or a different type?you also should know that bleeding can result from the removal of the granuloma and also even before the removal.its just different for each child. if you dont have any trach change issue then its possible you will not have any problems, but do you know were the granulom is and how much occlusion is there? i think getting another opinion is good as long as you dont have to wait long... can you get the results of the bronch..i hope this helps . good luck and keep us posted as to what you decide. take care and i am sorry that decan didnt happen this time, but i am sure it will happen soon. Im sure if you email Dr Cotton he will let you know his opinion , and if you cant travel he could reccomend someone in your area to see, because he does do that... take care
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Old 05-04-2007, 08:25 AM
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IF your gut is telling you to get a 2nd opionion, do it.

Sure e-mail Dr. Cotton adn get his advice, maybe even see if he'ld want to take your child on. It definately wouldn't hurt the situation.

Best of luck and i'll be praying for you.

Robin
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