Will's ltp is scheduled

willsmom · #1 11-21-2006, 03:03 PM

Well, we got the official word from Dr Cotton last week. What we thought was a Grade 3, 80% subglottic stenosis, actually isn't. He said it was a Grade 1 at most, and it wasn't the stenosis that was he was going to be fixing per say, but instead the "anterior airway collapse of his airway". This kind of sucks in a way, because the area he is fixing with the LTP is because of the damage his trach did to his airway. He actually said I am not sure why he was trached in the first place unless the original problem has resolved. Kind of sucks, but good news I guess??

Anyway, it looks like we will be heading back to Cincy for our January 25th LTP. Man what a roller coaster!! Will did wonderful at all of the week long appointments (except for the swallow study), but they were very pleased with everything else. The said he wasn't refluxing, he had less than 2% lipids and no bugs in his lung washing, and wonderful lungs, go they are ready to do it.

I am a nervous wreck!! I am so scared, I know it has to be done, but what if they do the LTP, but he still can't breath without the trach and we have to end up coming home with it back in?? What if this is not the problem?? What if there is some underlying condition we don't know yet??? I know that is a lot of what if's, but it is so hard to just trust the diagnosis, and just think that everything will be allright. I know Dr Cotton knows what he is doing, I trust him, but man, there are so many uncertainties in the world of Will. Sorry, I guess I need some cheese with that "wine".

Oh and the best part about the whole thing is that my work doesn't want to get me the time off. After I threw a fit and threatened quiting, they agreed to give me the time off, but have not decided on how to compensate me for it. What??? Walmart is a multitrillion dollar company, what is three weeks salary to them?? What a bunch of crap, I have enough things to worry about without having to stress out about how I am going to make my house payment while I am gone. Anyway, it has to be done and I am going and staying there the entire time with him, so they had just better figure it out!!

lovemymak · #2 11-21-2006, 03:44 PM

Sabrina, I know you are really going through a lot right now. Try to take a deep breath and take it one step at a time. There are always going to be lots of "ifs". It is the nature of the way our children are. ANY of our children. I have "ifs" about my normal children! You need to focus on Will and your health right now. Take care of the "ifs" later "IF" they actually come. Stress won't help your health. I hope you can get some rest, and I hope work gives you compensation. Good luck Will!

Sarah

#3 11-22-2006, 12:54 AM

Sabrina, I know exactly how you feel, Ridhaa is having his ltp done on 9 February, and our co is closing over Christmas/New years, and that means that we have compulsory leave, which means that I will have little to no leave left when time for the ltp comes. I'll be thinking of you and

as time gets closer to the 25th Jan. Lameez

hcs_mom · #4 11-22-2006, 05:24 AM

Sabrina,

I so feel your pain. Hannah is scheduled for her 3rd attempt at reconstruction. The initial issue we were trying to fix (subglottic stenosis) has been resolved, however, the trach itself has now damaged "good" airway tissue. Sometimes, these kids just defy the rules. Hannah's stenosis was severe and it is not uncommon for them to need more than 1 "open" airway procedure to get it right. Sometimes (like the collapse below the trach site) just happen.

Your feelings are very normal. This is quite easy to say, but the reality, oi...but try not to worry. Will is in good hands. Yes, people can make mistakes, but you just have to know that he is getting the best care and that Dr. C and crew will do everything they can to help Will achieve the best outcome (decannulation).

I feel like a "pro" at this LTP/CTR stuff, but that doesn't mean my emotions don't rage out of control at times. Please feel free to email me anytime. We can stress out together.

Seriously, I'm not far from the hospital. I will do whatever I can to help you all out while you are in town. Please don't be afraid to ask. Sometimes, I think this is why God allowed all of this with Hannah...I know how tough it is to go through this surgery, and we are here in Cinci...I can't imagine traveling for this. Please don't be afraid to let me know if you need anything.

Hugs to you. Jan 25th will be here soon.

Jennie

alissafaith's mom · #5 11-22-2006, 08:37 AM

The LTp is a scary time, but he is going to be in the best of hands Alissa had her almost a year ago Nov 28th 2005 and she was decannulated at the same time. It is a scary surgery. But it is so worth it it the end. Good luck on jan 25th.
mandi

JWorthington · #6 11-22-2006, 08:53 AM

Sabrina

Hope everything goes well on 25th Jan.

Try to relax and have an enjoyable Christmas time with your boy. I know it is a worrying time, but hang in there, he is in the best possible hands with Dr Cotton.

Julie

shon-mg · #7 11-22-2006, 08:20 PM

Hi, good luck and hope it works out well for you both. We have 2 reconstructions and still have our trachie in. My son is going back for a bronch on Dec 11th and they will try to decan again - if it fails this time he will be getting a t-tube put in.
I know how you feel.
Cheers
Shona