Mama can't get sick

January 15, 2005

Hi All,

We've had an interesting development here. I finally went to the

doctors after coughing for 3 months, hadn't been seen since before

was born (2 1/2 years ago). I had a chest Xray, pulmonary

function tests, and a barium swallow, and things are not pretty. I

have aspiration pneumonia, chronic changes in the right middle lobe,

mucus plugs and bronchiectasis. All seems to be related to the

problems seen on the barium swallow- reflux with aspiration, hiatal

hernia, and esophageal dysmotility. The radiologist was concerned

and he advised me to take one sip of fluid at a time, chew tiny bites

thoroughly, and stick with soft foods until I see my GP. For pete's

sake, this has probably been going on for a long time. I should be

skinny by now!

Of course, this has made me think about how it could be related to

's mito and profound GI problems, and now I'm wondering if I

should get checked out. I'd love to talk to any mommies who have

been tested for mito after having a child diagnosed.

The difficult thing is that I just don't have time to take care of

myself after doing what needs to be done for , Nick (autistic)

and (6 and typical, but can sometimes be more work than Nick),

working, etc. I have an extremely supportive, competent, loving

husband who is concerned about me and does what he can (he took a

double shift with last night so I could sleep). We are

approved for 92 hrs/week of home nursing for but currently

fill 35-40 hours. I've even looked into out-of-home respite

placement but is too functional because she can pull to stand

(can you believe it?).

Nick is being evaluated by Dr. Korson in Feb and I wonder if I should

make an appt for myself? Ugh.

Thanks

Heidi, Mom to , 2, mito myopathy, TPN dependent, intestinal

pseudo obstruction, g tube for drainage, j for meds and tiny feeds,

neurogenic bladder and cathed, RTA and ATN (kidney stuff), gall

bladder issues, dysautonomia, anemia, dystonia, seizures, retinitis

pigmentosa and blind, O2, yadda yadda, has great teeth!

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