Thanks ya'll. I'm writing down everything you send. Amy

Amy, I am just stunned that you and your husband have to deal with this after all you have been through. Please know I am another sending all good wishes your way.

I, too, had a trach, and the scariest thing about it was the suctioning. When I first awoke after the surgury, there were a lot of secretions and a couple of times I had to gesture wildly to get some suction, so stay close and watch for that.

As far as healing, I am no spring chicken, but mine healed very rapidly - probably a week or maybe ten days at the most. And nobody told me about putting my fingers over it to talk, so it might have been even faster if I had.

When this is all done, you will be able to feel the sighs of relief from all parts of this country and beyond.

"When this is all done, you will be able to feel the sighs of relief from all parts of this country and beyond. "

You can say that again! Amy, you and John are very much in my thoughts every day. Nelie

Amy,
I awoke from my biopsy with a trach. The ENT surgeon thought that my tumor was so large that the biopsy might choke me so he put in the trach. At first I could only talk if I put my finger over the end but the next week he replaced it with a "talking trach" that allowed me to speak normally.
Once I got to M.D. Anderson the surgeon there said I never needed the trach in the first place and he had it removed by his his P.A. who taped up the hole, which healed in a couple of weeks. The trach is like the feeding tube...at first it is scary and you doubt that you will be able to deal with it, clean it, suction it, change it out, etc., but after a couple of days you realize that there is not much to it at all. One time mine fell out on the counter and I just stuck it back in.

I am sorry about the new ordeal. Best of luck with it all.

Danny G.

Don't know about you all, but I think I will investigate buying stock in a "printer paper" company. As I type, I am printing out all of the above.
Danny G. we are thinking hard about a 2nd opinion at MD Anderson,. Will see what transpires at our meeting with John's surgeon[which is not scheduled yet.] I can't tell you all how much your imput means to us right now. Amy

Amy,

Reading what Minnie wrote really brought back memories of my mom's trach...I do think that was one of the scariest things about her surgery. Make sure you have nurses that are willing to help you out because my mom like Minnie did not get the best care and some of the nurses had no idea how to suction and it was a truly frightening experience for my sister and I. At one point my sister had to run down to the floor below to get the nurse that my mom had, had the night before to come and suction her out because the nurse that she had at one point barely spoke English and we thought she was going to kill our mother..(strange because when I talked to a close friend who teaches nursing at USC county hospital she said that is one the basic things that she teaches students in nursing school.)

My mom's trach hole healed up pretty quickly and now since her radiation you can barely see her scar. I think the thought of the trach was scary to us but after seeing her we became used to it but believe me we could not have been more releaved once that was gone.

My thoughts and prayers are with you and John. My baby girl Keeley and I will definately be including you in our nightly prayers.

Hugs,
Dani

Thank you Dani, for your input. The nursing care issue scares me alot because since I had the stroke, if I don't get enough sleep, my brain gets really fuzzy. I know that I will have to spend some time in the "hospital hotel" resting in order to help care for him. As things stand today, surgery is scheduled for Feb 9th. We go for a "face to face" with the Head and Neck surgeon and the Plastic Reconstruction surgeon on Feb 1st. Since our H&N surgeon is out of town this week, I asked his nurse today about how many of these procedures he has done. She said he only does H&N and is Board Certified in Otolaryngology and Oncology and has done alot of this surgery.[ I didn't get to ask how many of those folks are still out there, but I will Feb. 1st] She also said this Plastic Surgeon is the only one he uses, so this guy has done a bunch of these too.I assume we can take some comfort in that. Wish things did not have to move so fast! Thanks for being here for me Ya'll. Amy

Hi Amy,
I've thought of you and John alot today and Dani's post reminded me to tell you that my trach scar is barely noticable also. I did have a cosmetic surgery to revise it but it still didn't look bad at all to begin with.
When I was diagnosed it was like walking into a world that I didn't know existed and I simply didn't have time to acclimate myself. I had to really, really trust my feelings. Much is said on this board about second opinions, and I agree with all that is said, a second opinion can be a valuable, sometimes lifesaving, tool. I also believe there are times that we just know there is no need for a second opinion because the first opinion simply feels right. That's how it was with me. I knew the moment I met my doctors that I was where I needed to be and we looked no further. I didn't research them, I didn't know their "track records", none of that. All I knew was that I believed every word they told me and I trusted that if anyone could save my life that it would be them. In almost three years they have yet to let me down. They know the names of all my children, spent the day at the walk a thon I hosted, and spent hours helping me set up my upcoming implants. What I am trying to say is to examine your feelings and make sure this is how you feel about Johns doctors. If you don't, then get a second opinion. If that means going to MD Anderson, then go, even if it means you have to beg, borrow and plead for the money. Shoot, I'll loan you the money myself if you need it. They say that doctors like to play God, have a God complex. I like to think of it as a role forced on them as they have people placing their lives in their hands on a daily basis.
I have always taken chances based on instinct and it's never let me down. Shoot, everyone told me that my husband was to different from me for a marriage to work............boy were they wrong, my instincts were correct when they told me that he was top of the line husband material! And he's spent the past two decades proving it to me and everyone else.
I'm rambling here. Hope I'm making my point though. Listen to yourself concerning the doctors.
I'm here if needed.
Minnie

Hi Amy, Minnie's post about the trach and her fears reminded me of my fear with the trach. To me, that was the worse part of the surgery. However, the radiation is what kicked my butt. I am glad to say that I am still here more than 3 years later. If you would like more info from me please email me.
Love, Carol

Hi Amy,

I am so sorry to hear about John. As a caregiver too, I know how scared you must be. Everyone has given you so much valuable information, I just wanted to reiterate about the trach. My husband had to have an emergency trach put in midway through his radiation treatments and they kept it in until he finished treatment just to be on the safe side.

At first he was very scared because he felt like he couldn't breathe. When he was in the hospital he would call the nurses in a lot to suction his trach. I stayed with him and that gave him peace of mind to have someone with him. He couldn't talk with that particular type of trach.

When he came home they replaced the trach with another kind that he could talk with. I also learned how to clean the trach, I suggest you have the nurses teach you how to do that too. It's very helpful. You might also want to get a suction machine to use to keep the trach cleaned out as well. I can't tell you how many times at night my husband would get up to use that suction machine.

When they removed my husband's trach, I was amazed at how quickly it healed. He still has a small scar but you can barely see it.

My prayers are with you both. You've got another battle ahead of you, but I know you can beat this awful disease!! Take care and hang tough.

Hugs,

Shelley