Barbara Selleck, Aspiration, pneumonia, etc.

[Guest guest]

Barb, help again?

Louise. Do you never sleep? I am sorry about getting this

back late but this has been a very busy day. I teach a senior ladies class

at church and they are falling out on me. One in hospital and one in nursing

home. Today was the day I spent checking up on them. Both are doing well.

Mollie, in hospital is 80 and Vesta, in nursing home, is 99. Lovely

ladies. They have been helping me along the way for six years.

Now to get to your note. I will use it to answer.

*********************************************************

Suction machine isn't working well anymore for

Jan and I try to roll him onto one side or the other after cleaning tonsil

areas with kleenex Viva paper towels because they don't fray.

*******************************************

First you need to get a new suction machine or you will

have an infection in his mouth and throat.

A wet cloth will work better than a dry kleenex or towel.

It seems strange but it works. There is always the chance that some

of the kleenex or towel will stick to the tongue and choke him. That

is scarey and miserable.

***********************************************

He can't control his tongue and isn't resting well unless

I'm up and making noise. I do sleep where he can see me and that

seems to help. Was your aspiration procedure better?

I used the suction machine at the hospital. It had a long

tube that reached in and pulled it out. Great gobs of phlegm. Rubbing his

back from top to bottom might help. Even tapping it so he can cough it

up.

********************************************* Jan's

long rubber peg tube is disintegrating from stomach acids and constant

cleaning of formula residue after nearly two years of use.

**************************************************

Two years of use of a PEG tube is too long. DEMAND a

new one before infection sets up in there.

I use silver nitrate caustic around the stoma and antibiotic

ointment on gauze dressings but coughing is causing leakage and he tremors

his hands forcibly against his stomach there.

************************************************

He is probably in pain from the tube.

If it is leaking you are in danger already. If

it is not secure in the stomach the fluids will leak into the abdominal

cavity and then you have danger of peritonitis. That is really wicked.

That is what happened to Ralph last April.

They had a very difficult time saving him, Tho they just

saved him for more misery.

**************************************************

He has been taking Guaifenesin, a lung expectorant

, for one week and the coughing is intense. Is mucus clear

in pneumonia? Our problem germ has been pseudomonas which produced

opaque greenish exudate.  !

;

& nb! sp;*************************************************

Tests have to be made for pneumonia. And x-rays.

I do know that he may be aspirating already if he is coughing so hard

*****************************************************Did

Ralph use Miralax for bowel elimination? It does nothing for Jan

without daily stool softeners and milk of mag laxative and sometimes even

then oversized Fleet enemas are necessary. This is preferable

to impactions and large fluid enemas that must be siphoned out or gallon

sized cleansing flushes to drink.**************************************************

Ralph took a daily dose of Milk of Magnesia but towards the end nothing

but enemas worked. The muscles and little wave makers in the lower

bowel were not working to move the fecal matter out. Not getting enough

fluids will also slow down the movement.

*****************************************************You

had so many painful crises and hospital experiences with Ralph and have

shared so much I hesitate to ask for details, yet with you and others

as pioneers and teachers comfort and better decisions for all 500 MSA sufferers

is possible.

Yes. We had some painful experiences but I do not mind

talking about them. If I can help even one care giver I will do it as long

as I can still type. Like so many of you folks, I had to learn on the job.

******************************************************

I am sorry I cannot do more to help. Everyone is so far

away.

I am up at all hours as you are, so feel free to drop

a line. I check my mail several times a day and before I go to bed.

Thanks, Barbara and thanks to Ralph , too, for encouraging

you to become the wonderful person you are. Louise

in LA still searching for better ways to cope with MSA.**************************************************

You really must check on the suction machine and get a new line

for the PEG tube.!!!!!!!!!!!!!!

Get some rest before you drop in your tracks.

Barb.

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