Tuesday, May 5, 2009

Back-up Cough-Assist!

Remember when I said that we were fighting for a back-up cough-assist?? Probably not, it was so long ago!!! Well yesterday we finally got our new cough-assist!! This is HUGE for us. Another small battle won. We didn't even really have to fight very hard. We requested, gave valid reasons why we needed this essential piece of equipment, and have a very wonderful social worker to help advocate for us....and the rest is history!

The machine was funded by the government and we are very grateful to have it. Without the cough-assist our daughter might still be alive but NOT without a tracheotomy (a tube placed through her neck into her lungs and attached to a ventilator 24/7). Not that I have ANYTHING against a trach. but for now Non-invasive ventilation and protocols are working very well for us. This secondary machine means that if something happens to one of Kaitlyn's cough-assists then we will ALWAYS have a back-up. Our children's hospital has only ONE cough-assist and NO plans to get another. The machine is so poorly understood!

We use Kaitlyn's cough-assist several times a day! Three times a day we do CPT (chest physiotherapy) followed by cough-assist. We also cough Kaitlyn before we place her on bi-pap. So that's 5 times a day we use the cough-assist on schedule. When she has increased secretions from a cold or flu, then we have to cough-her more often. I have had to cough Kaitlyn every few minutes for several hours in a row to help her get through a bad cold. When she is sick she is chained at the hip to this machine (so to speak). We also use the cough-assist anytime that Kaitlyn chokes on her own saliva, or throws a plug (this happens quite frequently).

The second cough-assist will also make our lives a lot easier as we can leave one machine always loaded on Kaitlyn's medical stroller/wheelchair. This will cut our packing to leave the house in half...maybe more!! The cough-assist barely fits on the stroller, it's a pretty tight squeeze. Loading and unloading the machine takes a lot of time.

This is a picture of Kaitlyn's cough-assist. It's a rather large machine (11.5 X 11 X 16.5 inches and weighing in at 24 lbs).

This is Kaitlyn's Medical Stroller/wheelchair. The cough-assist is the BIG grey box-like thing underneath Kaitlyn's seat towards the front of the stroller.

A well loaded down stroller. Cough-assist, inverter, gel cell battery, oximeter, bi-pap, DVD player, and feed pump. Suction we either carry or hang from the handle bars! (phew!)

A picture of Owen and Kaitlyn this afternoon. He just absolutely adores this baby girl. They were laying together watching Diego DVD (yes...that's right...I said Diego!!! It's the ONLY other acceptable programming allowed on Kaitlyn's DVD player!)


Devon said...

Awesome! I'm so glad you got it!!

The picture of Kaitlyn and Owen is darling. She is lucky to have such a great brother! (well, 2 of them!)

gary said...

We are glad you found a CoughAssist. She is beautiful. There is a ton of info on in it at http://www.coughassist.org

MaddiesMom said...

Your pictures was STOLEN! https://www.facebook.com/ashley.bouchard.31214?fref=ts.

please watermark all your pictures so crazy ass people stop doing this.