breathing difficulties

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ReginaS

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Hi all,
My PALS describes that he has the feeling that the air passages in his head (above throat) are not staying open but collapse or close when his head is in certain positions. Do you know what is happening?
He is uncomfortable lying down, elevated lying on one side is OK - on the other it's not.
He sleeps in elevated position and also in sitting position. Now it's harder to hold up his head.

Swallowing thin liquids and solids leads to coughing/choking but also, some foods like yoghurt make him cough even if they have tolerable consistency.

So far he has not been able to get used to trilogy and he does not want a feeding tube.
Thanks for your input and experience. I have been reading this forum again in the past few days and so much enjoy the support.
Ina
 

lgelb

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So you might want to try a soft cervical collar for when he's seated.

I think we discussed the collapse of those tissues in another thread (don't forget the search box)...when the muscles lose tone in a "tube" or at one end or another, the passages can't stay open as well. I would be happy to help w/ his Trilogy setup and will PM you so you have my email. Often it is not at the right settings and/or he may not have the right mask.

Yogurt can be difficult -- it is kind of a suspension and dairy apart from ice cream or shakes can be problematic. That one got crossed off early for us. Ahead of that, I would put applesauce, smooth pudding cups, thick but smooth soups, eggs (blended into things raw, or cooked however he tolerates best), mashed potatoes, shakes, ice cream, gelato...we have talked about pureeing meat and veggies as well, with a high-power blender.

Best,
Laurie
 
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