Torture Machine is the affectionate name I call the machine that arrived in my house today. It's technical name is "Cough assist" and I have mentioned it before on previous blogs.
Before I start my rant, let me say that I am very grateful to have been given this machine with no insurance headaches. (It's a very expensive machine.) And not everyone qualifies for it. I saw a youtube video about it just the other day. A 9 year old girl with SMA was talking about how she is still alive but many of her fellow SMA friends who didn't have the machine are now dead. She thinks it's a life saver. And perhaps some day we will feel the same about it.
But for now ... my heart is in my throat.
For a refresher ... the idea of this machine is simple. Pushes air in then pulls air out of the lungs. The goal is to produce a cough. This is especially helpful for kids with weakened muscles like Manny has. (And in case I haven't been clear about this, he has been labeled as "Severely hypotonic" and several doctors have described him as the worst they have seen.)
So this all sounds great. Right? What's the problem?
4 things. 1) When this machine is on Manny, he looks like he is going to die. He has these eyes that beg me to save him. (And that's when the Respiratory therapists were doing the treatment not me.) He seriously looks like he is being tortured!
2) *I* am the one who is supposed to be administering this torture from now on. It's not for very long ... but several times a day.
3) Several of the respiratory therapists mentioned that they felt this machine was actually unsafe. One went a far as to say she wished someone would push it down the stairs. One actually "refused" to administer the treatment since he felt the doctor had ordered to high of a pressure setting. (He said that the level was the same as those used by 120 pound teens and he is a 19 pound baby.)
4) There's a question of effectiveness. In ALL the times they did this treatment for him ... he NEVER ONCE produced even the smallest of coughs. So is this torture worth it?
So as I sit here, just feet from this machine ... I'm really not sure what I'm going to do yet about it. I'm not one to go against medical advice ... and especially with Manny since he is so complex. But I also can't imagine myself turning on this machine, walking up to him and starting the torture ... I mean "treatment".
I'll let you know what I decide.