Dme trying to take asa's vent!

[Ann]

The FIRST thing I would do is to get in touch with the local media. If you tell them about your situation and that the equipment company wants to take your child's life support away, I'm sure you will get air time. Call and ask for the public relations department of all the news stations. This is at least a start. Also, do not give up the vent, I can't imagine that they are legally allowed to remove life support for financial reasons - along the same lines that an emergency room cannot turn away a patient that needs life saving treatment due to no insurance.

Keep us posted!

[Jacob's Mom]

The first thing I thought of when I read this was that if our DME company threated to take away the vent I would be sitting in a locked closet with Jacob and the vent. But, seriously, I don't know how they can do that. This is a life or death situation. Why did you guys moving change the whole situation? I also know that DME companies don't make much, if any money off of vent patients, but that is their business. Apparently they are making something or they wouldn't be in business. I hope it all get straightened out - very soon!!

[Shari]

What are they going to do, come take it from you? The person taking it will be charged with murder! Let's get real. Tell them that it's descrimination against Medicaid and that your going to the press. Where do you live, Texas, right? I think I've read your web page. What vent do you have? If you've got an LTV, I'll bet that I can get Pulmonetics after them for you.
-Shari

[Jacob's Mom]

After re-reading my above post I am hoping that I did not come off as making light of this situation. It is indeed very serious and I think everyone has the right idea - GET THIS OUT THERE IN THE PUBLIC EYE. Make that DME company see what can and ultimately will happen to your child if they take his source of life away from him. Good luck with everything and know that we are here and are advocates for you and little Asa.

[Shari]

Listen, all you have to do is say the word. Tell us the name of your local DME and your local paper. They won't know what hit them. CNN would LOVE this one, esp approaching an election year.
-Shari

[Jacks Mum]

Did you just say that you awoke to Asa'a alarms and the nurse was sleeping? OMG Â* Â*really?

I bet you fired her sorry bottom right out of your house!
What is with nurses? I hope you tell your agency not to pay her for the whole shift as she wasn't working the whole shift...

Let us know how things go!
Jessica

[akabot]

I am sorry that you are having to deal with all of this. My son is off of the ventilator now. When he was on it, I used to say that the hardest part of having a child on life support was dealing with equipment companies and nursing agencies! Don't let your equipment company push you around.

Ours kept trying to return a ventilator that we refused because it was malfunctioning. They told us that we were getting different ventilators each time, but they were lies. My husband had taped a piece of green tape where they could not see it and that was our proof. Now my husband has them scared spitless. We have been so unhappy with them that we intend to contact our insurance company and tell them that it is not safe for them to cover this agency.

As far as nurses...I have caught several sound asleep and probably should have fired them. I had one nurse have the nerve to tell me that another case of hers lets her sleep. As if I am going to let her do that!!!!

Hang in there, you sound like a good parent who knows how to get things done.

Amy

[cariaad]

I am so sorry youre having all this trouble! Like we need more stress...start with your govenor and your representatives, and write them all detailed letters about what's going on. Keep copies adn be firm and clear about all the trouble and where it can lead to. They personally probably wont respond, but most have wonderful staffs who have a lot of resources at their fingertips, and they can give you the names/numbers of who to start with to get things changed. If the new vent they bring is not to your satisfaction, do not let the old one leave your house! An equip. company rep CANNOT legally remove your child from equipment (at least Ive been told by ours that the parent must do it or you can file assault charges!). Anyway, keep on fighting for what you need! DEb

[christyw]

I'm curious too about the new vent. Also, do you have 2? Our docs made us have 2, so we had a back up. Anyway, we never had vents changed out until the "hours" got too high or there was a problem that either we reported or that the vent was on a recall list. So, other than that, I didn't see why they would switch out.

anxious to hear!

Sorry about your nurse. I've had that happen once. the feeding pump, that gaithy once was on, was beeping like crazy - we were down the hall, with bedroom door closed - ASLEEP - and I heard the alarm after a little bit. The nurse was sitting in the glider rocker snoozing, RIGHT in front of the crib, and right in front of the pump! - and didn't hear it. Jeremy got up, opened our bedroom door and loudly, and DEEPLY, yelled the nurse's name!! I thought what he did was hilarious, because I know it scared the crap out of her.

christy

[cariaad]

Hi I was just wondering how things had resolved? Deb