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I am Ola, mom to Michael, 3.5 months, PRS, trached two months ago because of a laryngospasm which occurred during the TLA/PEG insertion surgery (the extubation was impossible because of the swelling). Now we are told the trach has to stay until the palate surgery and then he will be checked again. The awful thing is that Michael CAN breathe without it now an yet we have to keep it! And I feel so bad thinking that we made a bad decision and burdened him with additional thing to fight.
Thanks for acceptance to the forum! I am especially eager to meet parents of other trached kids with PRS... Are there any here right now?
11-26-2007, 07:41 PM
Hi Ola, welcome to a great place with tons of information!
My daughter Kate is 14 mos with PRS, second to Sticklers. She had TLA when she was 3 weeks old, but it was unsuccessful in keeping her airway clear. She was trached at 7 weeks. She's getting bronched on 12/6, but my dh and I are pretty sure the tongue is no longer obstructing her airway. Unfortunately, Kate now has subglottic stenosis from being intubated, and will require reconstructive surgery to repair her airway. We're hoping to have it done early next year.
You can see from her pic that hers is a mild case, her jaw is not very recessed and I'm not sure if people didn't know she had PRS, that anyone would think anything was unusual. She's a healthy girl, who's learning to eat orally. She gets 3 bolus feeds overnight through her n/g tube.
Sorry for the ramble...welcome!!!
11-26-2007, 08:02 PM
Welcome Ola, our son, Alize, doesn't have PRS but we're working on fostering a little one who does. She, too, is trached so I'll soon be sucking in all of the informtion I can.
11-27-2007, 02:36 AM
Welcome Ola, you've found a great place for information and support. Looking forward to getting to know you.
My little figther
11-27-2007, 10:02 AM
Welcome to the boards, my grand son is trached as well. He does not have PRS so I wont really be able to help with this issue ... but you found a great place to ask questions, vent and laugh. It is a great message board
I look forward knowing your little one and your family
Certainly Kate looks like a mild case! Her jaw looks great! Michael also does not have the worst, and started growing already, so we hope he will have a nice chin too. We are also trying to wean him from the tube and so far it has been going well. I will write more in the more appropriate thread perhaps.
Nice to meet you!
I will certainly share whatever experience I have (still limited but at least I know something about PRS now... And it is better than it seemed at the beginning when Michael was born).
Thanks :-) My mom is also very concerned about her grandson, she came here to the US (we are originally Poland and my husband is from Romania) to help.
Thank you, I am looking forward to get to know you and all the people here!
11-27-2007, 09:05 PM
Welcome. My daughter doesn't have PRS, but she has an underdeveloped jaw, which is why she is trached (they say it is severe). She is actually missing some bones on the right side. We see plastics in 2 weeks! Hopefully I'll have some good info to share!
Looking forward to getting to know you both.
11-28-2007, 01:11 AM
Welcome to the boards Ola, can't wait to hear more about you and your little one :)
Nice to meet you! I will keep my fingers cressed for your plasctics visit - ours are usually v. good and I am positive after every time we go there!
I will try to add a picture when I have some more time!
11-29-2007, 06:59 AM
Welcome! Our son is 11 months old, he was trach'd for bilateral vocal cord paralysis.
Please don't feel guilty about the trach. Your son doesn't know any different, and hopefully it'll be out while he is still relatively young, and he won't even remember it. Our son has never seemed bothered by his trach.
I wanted to add, we also go to Boston Children's, they do a great job there. We travel three hours each way to see Isaac's ENT specialist.
your son on the pisture with the feet looks similar to my Michael :-) How old is he in that pictore (jus wonder when Michael may express interest in his feet).
Who is your ENT? Ours is Dr Jones. We have just seen him two days ago and surprisingly, he was quite positive.
Indeed Michael does not seem to be bothered by the trach, I am just worried that it will affect his speech development even more (in addition to the cleft palate).
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