Hope of Getting off the Vent

[dc-b]

My baby son Jet was discovered to have long-segment tracheal stenosis when he was 3 1/2 months old and had a pericardial patch to expand his trachea (performed on 2/1/03). He had a tracheotomy 10 days after that. The doctors at Loma Linda Hospital have seemingly given up on trying to get him off the vent, because he has tracheomalacia as a result of the flimsiness of the patch. Though Jet can breathe on his own--and proved it by sprinting for hours at a time 3 weeks ago--they think it takes too much work and will cause him to lose weight, and can't get him to gain weight because of his heart defect alone. They seem to think that getting him into a sub-acute facility is the goal. They are working under the theory that it's a miracle he's still alive, rather than the question of what they can do to get him home. They have given up on trying to convince the home vent team that Jet can go home, because the ENT's here are so unsure of Jet's airway--they want to bronch him every other day--much too often for him to go home. They've never done or seen a surgery like Jet's before and are playing it safe. Does anyone out there have a story that can give me confidence that Jet will someday come home? And perhaps breathe on his own?
Danielle Cohen-Bautista,
mother of Jet Bautista
jetsplanet.org

[Mason'sMom&Dad]

Hi Danielle-

We also experienced a hospital/doctors giving up on our son because they had not ever seen his disorder before. It took us three months to finally get him transferred to a children's center. Because of the first hospital's ignorance and arrogance our son sustained damage to his heart, kidneys, trachea and bronchia. Hello, tracheostomy. The new hospital, Cal Pacific, was a wonderful experience and our son was home 6 weeks later.

I don't know if moving your son is an option, but if your current situation is leading to a care facility, what have you got to lose? Dr. Cotton sounds pretty wonderful.

As far as those bronchs every other day, bronchs actually irritate and inflame the trachea PROMOTING malacia!!! Wouldn't that many bronchs also irritate and weaken the patch?

Don't ever give up on your child, and never let anyone else do it, either!!!!!!!!!!!! You're doing great, just hang in there!!!

Good luck-

Staceyanne

[christyw]

Danielle,

I don't know about the long-segment stenosis, the patch, and those frequent bronchs, however, I would never give up hope, at least not with only the opinions of one team of docs. I have never taken advantage of Dr. Cotton's expertise in Cincinnati, Ohio, but I have read of endless wonders performed by him. He is one of the top ENT's in the entire country and has certain surgical techniques that he, himself, coined and perfected. So many kids are either misdiagnosed in their airway issues or are said to be hopeless - but Dr. Cotton would see the child and everything would change. Not saying that he can instantly make the child better, but he can get many on the road to real recovery. Maybe he can help your baby as well.

I don't know where you are exactly, but I'd just give some place else a try if it is at all possible. My daughter had severe tracheobronchial malacia and BPD (bronchopulmonary dysplasia -i.e. respiratory disease due to prematurity) - she was one pound when she was born. I was encouraged to terminate before hand, but never would have - and they said she was probably being born to die, but she's going to be three years old in August. She has come through severe pulmonary hypertension and terrible lungs and is just about completely off of her vent. We're down to only a few hours at night and waiting on a sleep study to do away with that. I don't know all about your child's heart problem, etc... and situations differ, but keep reaching for something better.

christy

clwortham@hotmail.com