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halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
Had a pretty bad scare this morning. I have a trache and use a ventilator at night for sleep apnea, but I don't absolutely need it. I can't move much and I have an alarm button I can push to call for help. Recently we've moved the alarm button to the pillow beside my head, because my neck muscles still work pretty well.

This morning, Fran got up about 7 as usual, and she rolled me on my side because I've been getting a sore on my butt. She had to move the alarm but we made sure I could still reach it with my head.

The alarm fell off just a couple of minutes after she left. I had no way to call for help, and Fran would not be back until 8 to give me some medicine. I was worried but okay. I stayed calm and even dozed a little. But then I started to cough. Fran had to flatten the bed to turn me, and I think because of my position I had a lot of secretions. They built up in the vent tube and I started having trouble breathing. At times it felt like the vent was completely blocked, then I would gasp and get some air. I needed suction but had no way to call.

Finally I started to panic, and that was when things got really bad. I began to thrash around, trying to turn my body and reach the alarm. I tried to reach the vent tube and pull it off. Nothing worked. All this movement made me breathe harder. I couldn't get air, I was gasping for breath but there wasn't enough.

I couldn't control my panic even though I knew it was making things worse. But finally I coughed off the ventilator tube, blowing it off my trache. (I have a really strong cough.) Instantly I felt better. I could breathe. I calmed down and was pretty comfortable, but shaken.

Fran came in about 10 minutes early, which was nice although the crisis had passed. It was another hour, after my morning cleanup, before I got my Dynavox set up and was able to tell Fran what had happened. She felt bad and kind of blamed herself. But really it was just a new situation we hadn't faced before.

We've learned from this, so hopefully our experience will serve as a warning to others.
 
Sheesh you poor thing! I would have freaked! You're okay now I trust?
 
What sort of alarm do you use?
I need to get something for my husband - he has no voice.
 
So sorry that happened Hal! Must have been terrifying for you. I remember Joel talking about similar incident when his son was helping out. Hugs to you and Fran--hope it never happens again.
Laurel
 
That is scary, Hal. It must have been more than scary. I hate ALS. I hate it.
 
I'm glad your ok. How scary for you.
 
Hal so glad you are ok now!
 
Very scary...I am sorry you had to endure this. Glad that you are OK.
 
Hal so glad you are ok now..that was so scarey.
 
Hal, I am so glad you are okay. Would a monitor work as a back up? Could Fran hear the thrashing?
 
Hal, sorry you had to go through that. I hope you are doing okay now and never have to have another moment like that.

Dana
 
Ditto what everyone else said! I found myself holding my breath as I read your post!
And I'm sure it must have been frightening for Fran as she "heard" what happened.
Here's to no more scary moments!
 
We used a baby monitor, I could hear if his bi-bap had water in the hose and also hear him cough. When he wanted to get up he would move his head to make the mask leak. I could hear him from any where in the house and could also walk the dog outside. our monitor beeped if you were out of the base station signal. We moved the monitor to where he was so I could move around the house and know he was safe. Penny1
 
Hal, so sorry you had that happen, and pray you never have another episode remotely like it! Penny's suggestion sounds so much better than I would expect from a baby monitor. Hope your solution is up and running, and you and Fran are able to relax!
 
Hal...So sorry you had to go through this. I can't imagine how scaary that must have been. Glad you are OK.
 
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