Well... I never thought I'd be feeding Elise mush. Mush, liquid meals and mush. I felt like Robin Hood with my big plastic bag over my shoulder, leaving the hospital taking the booty - lots of Resource drinks to tie Elise over to next week (it was heavy). For those who don't work at a nursing home or hospital - Resource drinks are for people who can't eat or don't absorb much.
Today the dietitian from the hospital rang to setup a special account so we can get them cheaper - $2.90 each normally - she is on 2/day. This reduced to $1 or $1.30 depending on the flavour. Elise likens them to strong cordial, so she dilutes it 50/50 with water. Apparently, peach and wildberry flavour are the go, chocolate is OK, the rest are vile (Elise's opinion after spitting out a coffee flavoured one, it was pretty bad). The drink is high energy, with electrolytes and supplements. Low fat and fibre.
I am learning a new term - gastroparesis. It really is a general term which doesn't indicate exactly where or why Elise's GI system (gastrointestinal system) isn't working much. While we were waiting for a gastroscopy .... Elise on the bed and me looking smart in my surgical cap ... I asked the senior Gastroenterologist some questions. Actually I grilled him because it was my only chance. Usually we just see the ward junior Gastroenterologist and they pass everything by him for decisions - cheaper that way. Fortunately we will see him at clinic. Anyway, I didn't miss the opportunity for every question I could think of, he was very patient as he waited to cart Elise off to theatre.
Yes, the Lupus is probably the cause, Elise's Lupus seems to love the nervous system and the GI system has plenty of nerves. So nerve damage probably everywhere - stomach, small intestine, colon, esophagus. However, if the stomach works...most of it follows. The new drug - Motilium or domperidone is a dopamine antagonist - it works by blocking the nausea signals and stimulating the stomach. So far it is working, she is eating probably 50% of normal intake.
The stomach empties usually in about 1.5hrs. So for gastroscopies you usually fast overnight. If the stomach still has food in it after 4hrs, then you may have gastroparesis. Well, after about 16hrs fasting Elise still had some food in the stomach - definitely a problem.
So in comes the mush.
If you have a GI motility disorder, you have to have a low fat, low fibre diet. Small meals, about 5-6 times per day. Fat and fibre slow the stomach emptying down and increase nausea. Ideally a soft, mushy diet - lots of soup, liquid meals, nibbly things. I am trying to be balanced and are ignoring the low fibre idea somewhat - some fibre is necessary... otherwise the other end will have another problem.
Then comes in the protein shakes.
Limiting food with a vegetarian diet, means not enough protein. So we are experimenting with shakes.
When I carried my booty out from the hospital, I digested the news Elise told me. When she was in hospital school before I collected her, the maths teacher revealed that she had diabetes type 1 and gastroparesis. They had a great chat about medications... comparing notes and problems. God really knows when to reach out and touch someone.
In summary, Elise seems to be picking up. She has more energy, went to school for a full day today and managed, is cracking jokes and can eat. Things to rejoice about.
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