So I'm home from Chateau Sinai, after being discharged yesterday afternoon. 6 days was more than enough for this girl.
We have a new game plan, and I'm still working on wrapping my head around it.
Jerome, or rather my jejunum can't handle a lot of anything at one time, so I'm the lucky winner of a pump that needs to be attached to me for 9hrs-ish/day.
This is how it's going to happen:
Fluids concoction, approx. 400-500mls/hour to cover 4000ml/4L. Consisting of: sea-salt, magnesium (tricks of the trade) and just plain tap water.
Jerome will get fed 60mls of the Vega mix very slowly through a syringe after every 1L of fluids mix. ( Vega,60ml/1L fluid concoction x's 3-4)
I've "lucked out" in that a lot of people with J tubes are on a pump for up to 24hrs.
The Vega mix is too gritty to go through the pump, and I refuse to use any of those nasty-chemical filled tube feeds, so it's through a syringe.
I don't want it hooked up at night because I move so much, pull on tubes and really don't want to deal with having to re-fill the bags, needing to pee like crazy and beeping alarms in the middle of the night. I need as much sleep as I can get, and good sleep is vital.
By doing it this way, I shouldn't have nearly as intense or frequent dysautonomia symptoms and will continually be hydrated with everything good. This also has huge potential to make recovery from hang-overs much easier.
It's essentially the same amount of stuff I was getting before, but now through a pump. I'm still eating about 1-2 meals in a day and drinking about 2L of water, or at least trying to.
I enlisted the help of some bendy friends, and found an awesome portable pump, and got a hilarious demonstration on how to use it,I'll hopefully be getting it soon. Dear:Bendy friends and Skype at stupid o'clock in the morning, I love you. Nobody at the hospital or home-care believed me that portable pumps existed until I busted out the info. the next morning. Buhahahahaha.
It's a Kangaroo pump, the Joey....
It's an expensive piece of machine, and I'd rather spend the money on something more fun, but that's the way it is. For now, as part of my discharge plan, they set up home-care to make sure everything's working properly and providing the same pump/supplies that were in the hospital. I got it today, and have used it for 1L. We are not friends yet. I'm trying to get as much as I can through with the gravity feeds and drinking. I should really be hooked up more, but I need a break from the beeping and humming of machines. My little one will be much quieter, easier to use and far less of a pain the ass.
Having to go this route totally sucks, and I hate it, but there's not choice other than to kick ass ass at it. It's a good thing Jerome can still have vodka :)
What doesn't kill you....
6 months ago