New here, and a few questions

ptoezee · #1 09-12-2007, 09:37 PM

Hi, My name is Patty and I have a DD that is 5 1/2 yo that is a former 26wker. She was on the ventilator for 7wks, she came home on O2, but for just about 2 months. Back in Jan of '05 we had a bronch done to check her airway and we found out that she had subglottic stenosis with almost 70% blocked....at the time, it was "wait and see if she will out grow it" Fast forward to 3 wks ago.

We had another bronch done and was told that her blockage was over 60% and completely around her trachea. The ENT said that since her airway is not growing well with her that she wanted to do the airway reconstruction surgery.

My Dh and I did alot of research on it and found out there were two ways to do it. The Single Stage LTP or Double (with the trach) Our Dr wants to do the double because she thinks that there are too many issues that could go wrong doing the SSLTP and she wants to do the Double stage because she would rather "err on the side of caution".

We have the surgery scheduled for next Wed, the 19th.

The thing that really confuses me is, my DD has never been hospitalized or needed additional O2 since she has been home from the NICU, I mean I realize she does have the narrowing....You can hear her breathing all over the place and there are many times we have had to do ER trips and she definitely does not have the reserve other kids do.

Im sorry this is all rambling, Im soooo tired and exhausted from worry and confusion and terrifed of the up and coming surgery. I hate the fact that my DD is going to be waking up with a trach...even if it is only for a few months while every thing heals and every thing that is going to go along with this....

I would sooo appreciate any advice or prayers.

is it difficult taking care of a trach?
Can kids still play or does it really slow them down?
Do they still talk?
and the list goes on and on....

Thanks if you get this far...My head is just swimming.

Oh, and yes, we did call Dr Cottons office, but we are still kind of afraid of things going wrong if we do the single stage. Our ENT has said that she has seen some bad outcomes from them. Im just not willing to take chances with my little girl.

Patty

cbissell · #2 09-13-2007, 04:53 AM

I'd want to know exactly how much experience your current ENT has. How many reconstructive surgeries has she done, what is her success rate, will the surgery be done at a major medical center? I would also get a second opinion, as it sounds like a single stage might be a better option in your daughter's case. Why go through a trach and second surgery if it's not necessary? Depending on the surgeon, the success rate of the single stage is very high (like around 95%).

Isaac'sMomandDad · #3 09-13-2007, 05:36 AM

Welcome and good luck!!

What did Dr. Cotton say? I would consider getting a second opinion before proceeding with surgery, even if it means delaying the surgery.

I hope you find the answers you need.

Lara

To answer a couple of your questions, my son had his trach done when he was 11 days old, so it really didn't slow him down, however he is just really used to it. He can make some noises around his trach, but he can't really 'talk'. I think most patients can't really talk around a trach unless they have a speaking valve. It would be a touch adjustment I would think for a five year old......

Lara

drct1245 · #4 09-13-2007, 09:41 PM

Patty...
Just wanted to say hi and give you hugs for the surgery. There are quite a few members w/ older children on the board w/ trach and there are some adults as well. Hopefully they will chime in. My son got his trach at about 4 months of age and has been on a vent and he has learned to crawl and is now learning to walk even while connected to either a vent or O2. We consider him pretty normal...

Anyone can learn to take care of a trach... there is just no swimming (or very minimal) or playing in sand boxes.
Good luck...

cmnorman · #5 09-14-2007, 08:04 AM

Ditto what Cindy said....you really need to ask those questions of your daughter's ENT before going through this surgery. And I would still ask Dr. Cotton for a second opinion. If anything, he will give the 'nod' that he has worked or trained others for that ENT.

We actually perferred a Single Stage LTP. Yes, it was difficult but my daughter was prone to swelling and the Single Stage, in the end, would cause the least amount of irritation while healing. Additionally, when we first listened to our local ENT (a mistake!), he wanted to do a double stage since he felt it was easier on the parents to deal with the drug withdrawals!!!! I almost laughed! Do you think we actually cared about that versus success of a MAJOR SURGERY!!! What it really meant was that he has no experience whatsoever with Single stage and it was easier on him! You must question everything and figure out if the motives of the ENT is based on statistics or their personal opinion and/or experience.

Good luck, I know it is a difficult decision. If you have feel that deep down in your gut that something is not right, go with that feeling and make sure you ask the questions.

Michelle

Kate · #6 09-14-2007, 08:21 AM

Just wanted to welcome you to the boards!!! Good luck--they are tough decisions. We don't have any experience with airway reconstruction....sorry. BUT WELCOME!

Kaylie · #7 09-14-2007, 12:22 PM

Hi and welcome to the board,
I agree with Cindy as well, i would ask those same quetions as well as get another opinion if you can.. i am sorry that you have to go thru this.. whatever you decide i wish you all the best and we will all be here to help support you all thru this journey as well. please take care
Kathy

JWorthington · #8 09-14-2007, 05:19 PM

Hi and welcome. I hope a trach isn't necessary. I agree with Cindy - ask lots of questions, and make sure you are dealing with an expert!

Good luck
Julie

ps update when you can.

ptoezee · #9 09-15-2007, 08:54 AM

Thank you all! I really do appreciate everything. The reason that our Dr gave us for doing the double stage is that she feels it is safer. She said that she has worked on other drs patients that had the single stage and they weren't pretty. Two of them had to be life flighted back to Cincinnati and another one she knows of that died and one that almost died. The reason is that, by doing the single stage, after taking the stint out, the cartilage that is used can fall and block the air way, and with having a trach in, if it does fall, the child can still breathe and she would rather not take additional risks...Which, my DH and I would rather not take the extra risk either...but we really DONT want a trach!

Another reason she wants to do the double stage is because of Katies reflux, "significant and prolonged" and her stenosis is all around her trachia and is an older scarring, tougher.

I did put a call into Dr. Cotton, they took all my information and said a nurse would call me back, but that was over a week ago and I havent heard from they yet. Unfortunately, I just dont think it is feasable for us to go to Cincinnati, especially if they tell us the same thing we are being told here.

Im just really nervous, but I know it will really help her in her future....

Does anything I have said make any sense? Im still up for any input or advice! Thanks again

Patty

JWorthington · #10 09-15-2007, 03:19 PM

Patty, I feel your pain. Yes, it is scary the prospect of a trach, but it is doable and will possibly only be short term?? Trachs are not scary once you are used to dealing with them. I don't know what else suggest either. we didn't want Sam to have one - and he went for surgery 'may come out with a trach' so when he did come back with trach, it was pretty crappy at first, but it is your child and it is amazing how quickly you get used to it.

Juliex