heated mist collar

[christyw]

Hello all,

I posted on the vent board that we have started to agressively wean gaithy from her night time ventilation. She's been sprinting for 12 hours during the day for some time now and we've been taking her off during nighttime sleep for about six weeks - it's going well, and if we can get into a sleep study really soon the vent will be GONE, and then we're on to decannulation. But when we went to pulmonary last Tuesday we were given orders for the wonderful heated mist collar and this incredibly loud nebulizer/air compressor that I know so many of you know all about.

The big pain right now is that we have to use the same heater/water bag for the ventilator and the mist collar. So, at 4 or 5 a.m. when we place gaithy back onto her vent we have to switch over the circuits - it's enough to really wake me up and keep me up for awhile! I'm a little bit of an insomniac as it is.

Anyway, I'm just venting to you all - it's an awesome step with gaithy, regardless of the loudness and all. I want to tap into any tips you all may have about this mist collar. I want to avoid ANY INFECTIONS, and I want to benefit from any of your experiences with this. If not, thanks for listening!! http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

christy

[Laurie]

I have heard that the heated mist system is more likely to grow bacteria than the cool mist (that we are on) but we have had three respiratory infections since January, so maybe it doesn't matter or has nothing to do with the mist system. Congrats to Gaithy for a big step forward!

[J&Jsmomee]

HI Christy! There is a quieter air compressor on the market. Ours is called Easy Air and I think its by Precision Medical. (if not, I'll let you know) It isn't silent by any means, but is much quieter than the other 2 we had prior. We use the warm mist as well, but keep it turned down as low as it will go. Joel is very warm natured and it makes him very hot.

[Olga]

I wish you luck in the change over. I know absolutely nothing about vents/mist collars etc, but it sounds that it is another step in the right direction. All I know is that any humidity around the trachy increases the risk of infection, which is why we weren't allowed a humidifier when we first brought Grace home after being trached. Our children's hospital have a policy of weaning trached kids off humidity before they are allowed to go home. If Grace has a really bad cold/chest infection where she requires extra humidity she has to be admitted to hospital where they can keep a close eye on her. Luckily this has only happened twice (touch wood). I hope all goes well and you manage to get enough sleep. Olga

[Jack's mom]

We used a heated mist collar for almost three years. Our compressor was really loud, so we got a huge length of O2 tubing, drilled a hole in Jack's bedroom floor leading to the basement and put the compressor down there. So the long tubing went from the compressor in the basement to his heater unit at his bedside. I've heard that some people put it in the closet and run the tubing to their heater. We also used adult circuit tubing, it seems to collect less water. We changed the whole circuit once a week. After about a year of being home we switched from sterile water to distilled water to put in the heater unit. Be sure that the heater unit with the water chamber is below the level of the child at all times, that way if you knock it over the water won't flow through the tubing and go down their trach. We also used a long section of blue tubing then a water trap bag and finally the shorter length adult sized heater tubing that connected to the water chamber of the (fischer pykel) heater unit. You might also like to get a couple of adult size trach masks to see if you like how those work as opposed to the pediatric size.

Hope that helps,
Jill

[Gretchen(Celia's mom)]

Hi Christy,,,,It sounds like things are going very well!!!! As for the lawn mower, we have been through a ton of compressors and I would just call our med supply company and have them come back out and get the noisy ones until we made it to one that was the quietest of them all!!!!! http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/tounge.gif I know kinda a pain in the behind but like I told them I wasn't sleeping with a Harley running in the room!!!!!! http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/tounge.gif One of little things that make a difference is,,,What it is sitting on,,If it is on a hard surface it will be louder,,,I have a coulple of pieces of foam wrapped in material that ours sits on,,This quiets it down alot,,,Also you get used to it and now after 5 years when I try to take a nap when the nurse is here I have to turn on the machine even though Celia is NOT in there so that I can sleep!!!!!! Good luck and like with everything else you will find what works for you!!!!!!

[christyw]

Thanks for the info about infection control and machines that are more quiet, etc... Gretchen - I hadn't even thought about what the machine is sitting on. Way back we used to have an O2 concentrator and we put towels under it to quieten it, but I'd forgotten. I have this compressor on her vent cart, so it's hard plastic - I'll do something with that today...as I search for a better machine. (Apria is so stubborn when it comes to supplies around here - "THIS is all we can get, THIS is the only brand we can get, etc...") I did put the machine on the second shelf and then attached a thick quilt to the front of the shelf (kind of like a curtain) and that blocks a great deal of noise. I'm just thankful we transititioned her to the toddler bed and her own room back in February - I would NOT be able to sleep with this in my room. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

Thank you all so much!!

christy

[christyw]

Just wanted to add that it does seem like Gaithy breathes SO much more smoothly and at a slower, nicer rate when she has her mist on. It just amazes me that our mouths and noses do all that this machine has to do for her. Anyway, getting closer to being without the vent at all - and for the six hours at night that gaithy does sleep off the vent, it is wonderful. She was ALWAYS having choking spells on the vent. Even the SMALLEST amount of water that collected in the circuit (I mean, stuff you couldn't even drain out) would choke her when she rolled around or breathed in deeply once in awhile. I was up so much - it drove me CRAZY! Her sats would drop for awhile b/c of the choking - but being off the vent she does AWESOME! Sleeps soundly without being bothered and her sats are great. It's really a nice step for us in our home (besides the noise, but I'm really already getting used to it! ) Thanks again!

christy

[Gretchen(Celia's mom)]

Christy,,,,I am soooooooo glad that Gaithy is doing so well off the vent so much and on humidified air!!!!! Also glad that you are getting used to the noise!!! I knew you would it just takes a little while!!!!!!!!!{{{{{{{{{HUGS}}}}}}}}