The following message is posted on the MGH forum and I thought
it
important enough to repost here. I tried some of the baby foods
with Kelly which she enjoyed. But her
tube was too small to try and
get anything but liquid down it. Damn, I wonder if I could have asked
for a wider
tube to allow pureed foods?
Reading things like this just reminds me......we never can ask too many
questions for
our pHD's care. What we need is a little person walking
behind us giving us reminders or to-do lists constantly.
Now I'm
depressed.........do we ever stop saying "I'm sorry angel"
Love
Jean
If you're a member of the
MGH forum you can write to this person
by responding to their post, at:
http://neuro-mancer.mgh.harvard.edu/ubb/Forum175/HTML/000184.html++++++++++++++++
My husband has been feeding via peg tube
for more than 2 yrs due to MS dysphagia. The feedings consisted of jevity, jevity plus and TwoCal. Despite ever increasing
volumes of these products used, my husband's weight dropped, his general nutrition dwindled until he developed pressure ulcers
that were slow to heal.
After a particularly nasty spell in. hospital, he was returned home to die under hospice care.
I quit my job and stayed home to be a caregiver.
I suspected that my husband's poor condition was due to inadequate
nutrition from the canned liquid foods, so I decided to supplement his PEG feedings with REAL FOOD.
I started with
stage 2 baby food meats, they are fine enough to pass easily through the tube if diluted with about 1/2 jar of water and added
directly to his jevity in the feeding bag. The tube did not clog, and the food was well tolerated by my husband.
Within
five days, both his nurse and I saw astonishing improvement in his stage 4 wounds! Tissue growth was greatly accelerated.
Also, the chronic problem with hard stools - "jevity stones" - vanished and his stools became regular, easily passed and well
formed.
I advanced from the baby meats to stage 2 dinners, using ratio of 1/2 jar water to 1 jar food, added to his
regular jevity, also baby cereal and fruit for breakfast. Husband gained weight, regrew lost hair, and the pressure ulcers,
one of which was a stage 4 with his hipbone exposed when I brought him home 4 months ago is now closing skin and almost completely
healed.
Will someone out there PLEASE spread the word throughout the medical community that these so-called "complete"
nutrition formulae are seriously defective in quantity/quality of protein.
Also, using REAL Foods is possible and can
be done safely via a PEG.
I will share what I have learned with anyone who asks.
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