Hey everyone!

[cari]

It has been awhile since I have posted so I thought that I would put up a little post and also ask for some supplies if anyone has them.
We were hoping that something had started moving for Emerson because she has been making a lot of noise but we were told by the ENT that nothing has really changed. Yuck! We also now are told that her hips may not be in the sockets because she bends really funny, they have also started to test her hearing every time she goes. We take one step forward and then three back it seems.
We were both in for muscle biopsies because they think that we both may have a rare form of muscular dystrophy. Blah!
I was hoping that someone might have some trach care kits that we could try. We don't have them here and I don't think that we are cleaning them as soon as we should. I am hoping that the kits would help us with this because it is such a pain to do al the prep work and get everything done.
I hope that everyone else is doing well and really love reading everyone's updates!!! I just keep wishing that we could be the update about decanulation.
Thanks again to everyone for such a great support resource!
Cari

[Mom2TwinsPlus1]

Not much help on the kits, but just wanted to say Hi and tell you to hang in there.

Sorry about her hips, Emma's were almost to the point of being out the socket before her hip surgery, or her miracle surgery was we call it here at home! I know how painful that can be, and how much of a pain it is when moving a child around and stuff. I hope Emerson's isn't too bad and that all works out.

Nice to see you back here btw!

[alizesmom]

Welcome back. Sorry that Emerson isn't getting the good news you want. I wish I could help with the trach kits, sorry. Karen

[babybear]

I have a few extra kits, but I'll be honest, you can buy what's in them much cheaper than it would cost for me to ship them to you. Here's what ours contain:

2 large pieces of gauze
saline
hydrogen peroxide (the OTC kind)
2 Q-tips
1 small piece of gauze with a slit to go under the trach

I just mix a small amount of peroxide with the saline and use the Q-tips to clean around the trach. I then use the larger gause to dry the area. If you still want to try the kits send me a PM and I'll see about sending a couple to you. :)

[JacobKaden]

Hey Cari, nice to hear from you! Sorry about the latest news about Emerson - I hear you about the "blah". There's only so much we can process at a time. We've never had "trach care kits" either:confused: We just use the usual supplies and try to keep everything organized - DH takes care of this;) as he's "Mr. Organized".

Jacob has his scope next week with the surgeon, so we are a little nervous these days....

Take care!

[KJKK8437]

I have a few extra kits, but I'll be honest, you can buy what's in them much cheaper than it would cost for me to ship them to you. Here's what ours contain:

2 large pieces of gauze
saline
hydrogen peroxide (the OTC kind)
2 Q-tips
1 small piece of gauze with a slit to go under the trach

I just mix a small amount of peroxide with the saline and use the Q-tips to clean around the trach. I then use the larger gause to dry the area. If you still want to try the kits send me a PM and I'll see about sending a couple to you. :)


Ours are very lightweight and easy to ship, but I'm not sure they are much help. Ours have several pieces of split gauze, a large piece of fabric to lay the trach on -- kinda like a dentist's bib -- a brush (for outside cleaning only, can't use inside the pede trach without damaging), two Q tips and some pipe cleaners, as well as sterile gloves. The container itself can be used to hold water for washing. No cleaning fluid comes with it. But, we have Bivona trachs and were told to use detergent, not peroxide.

I can send some if you'd like. I am not sur eif you will find it any help in getting organized or not.