Awful sores on lily's neck

Hi All- I read daily but don't post often. I have 11 month old triplets and our daughter is trached/g-tube/vent at night/hh collar during the day. Last Friday, while changing her ties I noticed a horrible "blistering" wound all over her nech under and around her trach ties (mainly on the side, not on the stoma, and some on the back). It looked absolutely horrible- like someone had burned her skin repeatedly and it blistered with yellowish, watery blisters. I called the pediatrician who told me to go to the E.R. because "they didn't have the facilities to treat a trached baby" (whatever- that's another topic), I called the ENT and he said to treat with Nystantin Ointment because it sounded like yeast. All weekend I cleaned her neck with soap/water and once a day 1/2 hydrogen peroxide 1/2 water (then rinsed), dried well, coated with Nystantin and put gauze between the wounds and trach ties.

I took her to the ENT yesterday and he said to stop the Nystantin and coat with Zinc Oxide, change ties 3x a day and keep dry. I don't know about the Zinc- it makes everything slippery and she decannulated herself 3x's yesterday (may have also been b/c I had her ties loose to help get air in there). I don't know what is the right thing to do. It is darker, looks like it is scabbing in places but still has what looks like a deep line of whiteish stuff where it is the worst.

Can anyone give me advice on this? I am going to follow up with a different doc. today for another issue and I'm curious what she will say.

Thank You!

Oh- I forgot something. Our DME started sending us "New" Dale Trach Ties that are supposed to be water resistant. I'm wondering if this has something to do with this outbreak. If they are water resistant, doesn't the water just sit on her skin? I called the DME about switching back to the older, white ones and she said all Dale Trach Ties are now made out of this Blue Water Resistant material. Anyone else had problems with these?

[Nate's Mom]

Ouch!!! sounds very painful. I don't really have any advice...sorry. We've never had anything like that. Maybe the ties are what's causing the problem. We used Posey trach ties....they are all one piece (a little fatter around the back of the neck) and velcro just loops through the phlanges. Might be worth trying something else. Good luck....please keep us posted!!

[cariaad]

I have a bunch of the old Dale (adult one size fits al) ones if you need them. Our DME sent a bunch just before Alli got her trach out. PM me your address if you want them. Deb

[JWorthington]

sorry, we've never had anything like that. but, if you have just recently switched ties, then it is probably them. Unfortunately we have no experience with those sort of ties. Hope you can get some answers soon. could you try switching to different ties for a few days to see if that makes a difference, that would tell. We just use the cotton tapes and Sam has never had a sore neck.

Good luck

Julie

[Judy]

We were sent some of the blue trach ties one time but we do not use them. We get the white ones each month with our monthly supplies. The blue ones we had seemed to be thicker and not as soft as the white ones.

That could be the reason for the blisters on your little Angel.
I agree with all the others about going back to the white ones
for a few days and see what happens.

To keep the skin dry on one of our little Trach Divas, the Dr.
prescribed Ny Stop powder. It has worked great!!!!

Good luck and please keep us posted. God Bless You.

Judy, Ken and the 4 special Angels

Well, we took Lily to the doctor and she thinks her neck was infected (on top of whatever started it- fungus, irritation, allergic reaction?) so she's on oral antibiotics and prednisone. It seems to be clearing up nicely as long as we cut the trach ties to half width and put gauze between her skin and trach ties. We're considering going to a chain instead of ties after she heals but I'm not sure where to get them.

[Nate's Mom]

We got our trach chains from our DME. Others here have purchased similar chains at hardware stores or made their own. I've heard the chains don't work well with the vent, so you may want to keep that in mind...but if Lily could wear chains during the day to help with healing, it might be worth the inconvenience of switching daily.