"not so good" news from ent

[christyw]

Ok, my dear friends. I have "bad" news. It's not the end of the world, but the ENT told me today, after Gaithy's bronch and ear tubes placement that she will have to have a tracheal reconstruction (LTP). Well, that was NOT what I wanted to hear. I didn't want to hear that the surgery would have to be done, and that the best case scenario is that the initial surgery would "take" just fine and she would recover and be able to have a successful decannulation - but that worst case scenario was that they would have to go back in a few to several more times if problems arose, and that it might not work out at all. I know that is supposed to be very unlikely, but the doc didn't want to say I KNOW your daughter will be ok and be decannulated. So, I'M WORRIED. I'm hurt that it's not working out as hoped. I HOPED for a smooth trip on this one - JUST this one...and that the doctor would say "her airway looks good!!" But that's not the case. There is a weak spot in the trachea, on the back side that is nextdoor to the esophagus, up where the trach is. It's been there a year or so at least...and I did know about it, but figured it had strengthened in the last nine months, but it hasn't and the doctor says it doesn't appear that growth and time are going to make any difference since they haven't up til now. So, unless something changes by the spring, she will have the LTP - yes...waiting til the spring!! I know it may be best...but I just wanted to get the trach out, and it's like I want the surgery NOW and just to get it over with. I know I am being SELFISH...but I just had my hopes set...and really, I just can't stop crying about it all because I know she is healthy and living and I should be thankful, but then I'm being stupid and selfish...I'm sorry...it's just a bad day. I AM glad that she is who she is, and I love her more than anything. I just need support about this and lots of info.

I need you all to lay out everything you know about LTP's...I'll go back and search some old stuff, but I'd appreciate whatever you can give me on this post. Whether the initial LTP failed or was successful - how long it took to recover, what the recovery was like, how long afterwards did decannulation come.

I also want you to know - you are my friends and I really appreciate you just BEING here to hear me vent. NO ONE is like you all as far as being able to vent frustrations and get what you need in return. You are a remarkable group.

Thank you all,

christy

(((((Christy))))) hello, sending you hugs. I'm sorry that you got bad news today. I don't know anything about LTP. Did Gaithy's Doctor say what caused the weakness in that area? Is this the type of surgery you hear so many people going to Dr. Cotten to do? I hope you get the info you are looking for. We will hope for the best next spring...

~Beth
Brynn's mom

[TanyaLea]

Hey Christy,

Sorry about the bad news...we are in the same situation as you. I have been researching the LTP too, but have no insight for you. Hopefully someone will answer your questions and I can learn from them too.

Tanya

[christyw]

Beth,

Yes, many of these surgeries are done by Dr. Cotton, as I recall.

The best guess on what caused the weakness is that she had a large granuloma that they didn't want to remove back in late 2001. They put in a longer trach to bypass it (it had occluded the airway suddenly, causing a BIG emergency), and didn't mess with it again for several months. It grew very large around the trach area, inside the trachea, and was VERY hard to remove when they finally did in spring 2002. So, the doctor says that is a contributor. Also, she was a preemie and had tracheobronchial malacia (floppy airway - poor cartilage rings in the trachea)...but the rest of the airway is fine now - just this one part. At one time, a couple bronchs ago, the doc mentioned the fact that she didn't eat and swallow well at all could be affecting the area, leaving it weak - but the last nine months have shown great improvement in swallowing and some in eating...so I don't really think that's the cause...this is just poor cartilage...I don't think it's going to change w/o surgery or "strengthen."

christy

[Ann]

Christy . . . I'm so sorry you didn't get the news you wanted. Â*Just when you think you're almost to the end, you run into another bump in the road Â* Â* You wonder just HOW MUCH we are supposed to be able to handle! Â*But, I know you will pick yourself up and do what needs to be done because you are an awesome mom and you are strong. Â*In the meantime, it's okay to cry and be mad and cry some more. Â*We are all here for you and we're sending lots of {{{HUGS}}} your way. Â*
Â*

[indiemum]

How can you possibly say that you are being selfish by wanting Gaithy's trach out. My goodness darlin, that is the dream. I wish I had some words to help you but I don't. I am sorry that missy poo has to have surgery, it would be so perfect for her just to cruise through decannulation. If she is going to be trached a bit longer than expected at least she has you looking after her. I think sometimes the disappointments are harder than dealing with day to day. Just cry it out, crying is so cleansing and it gets you to acceptance which is such an important tool. In the meantime I will pray for some good news. Chris, a lot of things can happen between now and Spring. Keep your chin up.

Kellyxoxoxoxoxoxoxoxoxo

[Jacks Mum]

Christy, I cannot understand how you are feling, Sad, frustrated, anxious, scared..I have not been through the LTP scenerio - its something I dont think I will ever face.
But yes! we are all here to offer advice, and give untimely advice as mothers, lay nurses, and friends.

I hope you get all the answers you are looking for adn hopefully some relief to yet another hurdle that is to be overcome..

Thinking of you

[cariaad]

Christy, Im so sorry you got bad news...it sounds like what we're expecting to hear at Alli's bronch next month too. They are ready to push for reconstructive surgery BUT Mike and I want to wait, hoping time and growth will have an effect. Dont feel selfish that you want the best for your child! It is what any parent wants, and our day to day lives see so much where we cant really do anything (medical) that it seems like a heavy burden. Have a good cry (that's what I always do) and then just remember that it can and does get better, and having a trach at least means having a "healthy" girl right now. Its good that we have each other thru these disappointments, cause we would really be so alone! Just let it out to us and hopefully you'll feel better. Deb

[Jacob's Mom]

Christy, I am so sorry to hear about this. I know just a few months ago you were talking about a trach cap and beginning the road to decannulation. But, you know what? You have faced these challenges before. They may of had a difference face, but you have been there and you were a strong, loving, caring mother. That is what has brought you and Gaithy this far. This is just another little bump. Yes, it does delay decannulation, but Gaithy will get there. I really wish I had more words of comfort, but all I can say is cry, cry, cry. Like someone else said, it does bring you to acceptance. I will be thinking of you all; please keep us updated.

[akabot]

Oh Christy! I'm so sorry that you are having to face yet another thing. I was so hoping that Gaithy would get her trach out soon and without difficulty. I was so excited when I heard that she was capped.

We are in the same situation that you guys are. Corey has subglottic stenosis. They tried on September 9th to laser out the scar tissue and put mitomycin C on it. Once they got down there, they saw that the scar tissue was such that lasering would not work. So, Corey will be getting the LTP this spring.

We are choosing to have the LTP performed by our local ENT. He is very well trained and experienced at these surgeries. Dr. Cotton does a single stage LTP where he decannulates the child at the same time as the surgery. He uses the ET tube as a stent and generally leaves the child sedated for a week or two until it heals. Our doctor does it differently. He leaves the trach in and leaves a stent in for six weeks following the procedure. Then he lets the child heal for another six weeks and then starts the decannulation process. We personally feel more comfortable with leaving the trach in after the surgery, because sedating Corey for that long scares me. Corey will probably need only 3-4 days in the hospital following our doctor's LTP.

We too were hoping to avoid this surgery. It's just another thing to get through. We are thinking and praying for you. Let me know if you want any more info or anything.

Amy