Barbara Selleck, Aspiration, pneumonia, etc.

[Guest guest]

Barb, help again? 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. 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?

Jan's long rubber peg tube is disintegrating from stomach acids and constant cleaning of formula residue after nearly two years of use. 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 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.

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.

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. 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.