Hi Everyone,

To my great pleasure and surprise the surgeon removed Joe's trach tube yesterday and discharged him!!!He felt he was healed enough and said take him home.They said the trach was going to have to stay in a lot longer but his healing process has been way ahead of schedule.I was just happy to able to take him home.

So,now I have some after surgery issues for all of you.How long does it usually take for the trach site to close?Do any of you have suggestions on how you kept the site clean.They gave him neosporin to use around the site,but I'm nervous that when I clean it I'm going to get something in there.This may be a little gross but when does the phelgm and such stop coming out of the site?I have a really strong stomach but for some reason this trach site is bothering me.

Also,I know I've addressed before about his multiple peg probelms.I went to flush it this morning and change his dressing and it seems he has some kind of substance coming out around where the plastic disk is.It looks like pieces of tissue.I haven't called the doctor because he just left the hospital yesterday and I assume if there was a probelm they would have addressed ot while he was there.I think I'm just being overly concerned.But I'd like to hear anything any of you can add.

Patty

Hi Patty,

I'm so glad Joe is home. The fact that he is healing so quickly is definitely a good sign.
If I recall correctly, the trach hole from Heather's first surgery shrunk down pretty quickly. It didn't close completely for about 3 weeks or so, but after the first few days, it was fairly small. As the hole shrunk, the oozing also diminished. Stuff still came out when Heather coughed or laughed, but it was minimal. We just cleaned it with a saline solution.

As for the PEG tube, Heather had a lot of seepage, which was usually yellow or green liquid. With her first PEG, she did have a lot of tissue granulation. It looked like the skin around the tube got bubbly, but it didn't come loose. If he has loose stuff coming out that looks like tissue, I'm afraid I can't help you. I suggest you call the dr even though Joe did just come home. You would be surprised the things that are missed when in the hospital. It is probably completely normal, but the dr can set your mind at ease.

Rainbows & hugs,
Rosie

Hi Rosie,
Thanks for the info.I just put a call into the interventional radiologist who put in all three pegs.The tissues particles seem to be coming out more so I want to be safe.

I have another question,when does the pins and needles feeling go away after the neck dissection?
The whole left side of his face is in various forms of numbness.Does this ever go away?It just amazes me how well he's doing!He's talking better now then he was with the tumor.

He still doesn't want any other treatment,and now I'm beginning to have a probelm with it.He had talk with his medical oncologist before he left the hospital and there may not be a chemo that will help him.I think the phrase that she used was that,they may find a cocktail to delay the progression for a short while but it's unlikely that it can be put into remission.

I had no knowledge of this converstion until yesterday,so I think I know where he's getting his attitude toward the treatments now.The oncologist said she was going to fax his whole file to a doc at MSKCC today for consult.I hope they can come up with a solution.I see how well he's doing after the surgery and it would break my heart if he didn't want to take any other measures.I said I was going to let him make his own choices so I'm stepping back.I guess I'm treading into dangerous territory again so I'm going to end now.Thank you all from your continued interest and support.


Patty

Hi Patty, The only part of your post that I can answer for you is about the neck dissection. He will likely have areas that will remain numb, In my case that area started out with all of the neck on that side and part of my back and shoulder. The feeling has returned in some areas over time (many months to years). Strange sensations like tingling and itches are common and will come and go as nerves grow back together. His neck may be stiff and some flexibility may be lost although over time it gets better. If his was a classic radical dissection (like mine) his shoulder will be affected and physical therapy may be useful. If his was a modified dissection the nerves to the shoulder may be spared.

Crossing dangerous territory is a specialty! :p

Hi Patty,
I had a trach and it was taken out approx. 5 days after my surgery. It took about 3 weeks to totally close and I kept it covered with some folded over 4x4's, then covered that again with gauze and tape. Use gentle tape as it can hurt the skin on the neck. I was told that if I kept my hand over the dressing when I talked and pushed on the folded over 4x4's that I used to put over the hole, that it would close up quicker. I hated, hated, hated that trach area and was so happy when it healed.
My neck is still numb in areas but I have grown use to it and hardly notice it at all unless I get one of the weird itches or tingles that Mark described. My shoulder is fine and my neck was stiff for a few months after but has gradually gotten better. I can look over both shoulders now!
Minnie

Doncha' just hate the phantom itch???? I scartch and can't feel it, so how can I feel the itch?

Really Patty, as everyone said it does fade, but at times it will itch and tingle. Sometimes little shooting pains. My shoulder is pretty much back too. I'm two years out from that surgery. Still can get a little stiff at times if I don't remind myself to rotate my head? Not quite the Linda Blair routine...

Take care,
Dinah

Hi everyone,

I just wanted to first thank you all for your continued support.

I spoke to the inter.radiologist awhile ago and he said that the little pieces of tissue that I'm seeing are normal.It can happen the entire time he has the peg in.So that is one question settled.
You have all been so helpful with the trach answers,thank you again.

The one question I forgot to pose was regarding his tongue.For those of you that had any tongue removed,Did your mouth droop on the side the tongue was removed from?He seems to only use his right side to talk and eat.He still has the sutures in his tongue and he says he can't feel it.I'm wondering if this is the surgery or the effects of the tumor.I thank you in advance for any help.


Thanks again,
Patty

Hi Patty

If neck dissection and tonge removal were on same side, probably a combination of both causing the droopy mouth. About 3 weeks after surgery I had driver's license picture taken, they played heck getting a decent picture where my smile wasn't really crooked.

Not feeling the sutures from what I remember was pretty normal too. After surgery of this type there's a lot of numbness for quite a while.

Bob