update: feeding tube cancelled again; L-Shanah Tovah Happy New Year

[Guest guest]

BTW, due to my extreme allergies (which mirror the BBD).....I was

going to get a rice based formula....and as I was getting better, I

was going to switch to blenderized food where I could take my good

healthy foods and put them in a blender or my SO would do that right

away so I could get my BBD healthy foods there and not use a formula

at all....My biggest swallow dysfunction affects swallowing liquids

so I could eat foods by mouth on good days but supplement liquids in

the tube....right now I'm getting fluids at home again through my

port a catheter.

but my latest saga story is:

This is unbelivable but after my doctor had arranged for me to be

admitted for GI to put the peg tube in....we arrive at Wake Forest

and learn that I'm not being direct admitted but I must go through ER

to be " evaluated " ....so they evaluate me and decide to go ahead and

admit me but not to the gastro or gen medicine floors but to the

neuro floor....The GI people come up and check me out and they say

they won't do the peg tube because " I'm stable " ...compared to what I

don't know.....and they aren't comfortable doing the tube and that

they usually do the tube as an outpatient etc etc so they just want

me to follow up with the GI doc on the 17th...(I don't think I'm even

going to keep that appt because that GI practice at Wake Forest has

been blowing me off for 18 months already) and they were going to

discharge me...So Medicare has a protocol if you are dischaged too

early so I called the appropriate numbers and initiated an immediate

appeal. This would allow me to stay in the hospital for 48 hours

while the medical review team in Raleigh evaluated my case and the

earliest they could discharge me was Monday......But I had already

called my family to come get me several hours before so they drove

the 120 miles back to the hospital (I caled on the cell when they

were half way and mentioned that I was going to be alowed to stay)

but the docs had already stopped treating me....and the nurses were

essentially ignoring me...not bringing my meds...I asked to be

transferred to a more approp ward because my neuro status was pretty

stable...It really wasn't though.....because my spasticity was much

worse than usual and weakness and dehydration had made me in a

position where I was to weak to walk on my own, sit up and so

on....Getting IV fluids did help....so when my family got there....we

sat and talked for a bit and decided that they were going to ignore

me on the ward even though I was still admitted....so we discharged

from the hospital and left with the huber needle still in place in my

portacath...and last night and now today, we are running IV

fluids...and he is trying to feed me small meals at a time....

(blended fruit with my multi vitamin this morning for example). I got

on the scale and had lost 4 more lbs in the 2 days I was there..I am

considering going to a diff GI practice that treats at a different

hospital there in Winston 2 hours away...but this is all so very very

frustrating. While I was in the hospital, my electrolytes were all

out of whack and I was emotionally a mess...all I could think of was

I was going to die soon (like anorexic's die of heart attacks etc...)

and no doctor cares.....That makes 7 times I've been told they were

putting a tube in and then cancelled and my health continues to

deteriorate. I'm home and in a better place and have IV hydration

going through my porta catheter. Do I need to keep seeing different

docs to get one that will do this correctly or give up? I really

truly believe that I was not meant to have this tube.

For my other list member friends here who are Jewish; L-Shanah

h...Happy New Year......