Next vlog coming soon to an internet near you!
TRANSCRIPT BELOW THE FOLD
Yeah yeah, one a week means once a month. You know the drill by now.
So where were we? Hospitals. I ran through the surgery and hospital stay in the last video, now we’re going to talk about the process of getting discharged and coming home with the tube.
It’s like bringing home a new baby only a lot less exciting for your parents. And less crying…sometimes.
While you’re in the hospital you’ll meet with several different people.
1) Someone from your surgical team – they’ll just give you basic information on caring for the site, instructions on exercise, ya know, your basic discharge information. You’ll also be given a follow up date to have your surgeon check on the surgical site.
2) Your nutritionist – They will decide the type of formula you need, the rate, method of feeding, etc. You’ll have a follow up with them two weeks after your appointment, at the same time you have the follow up with your surgeon. After that your nutrition will be handled by your home care company. Which brings me to…
3) Social Worker Nurse – They will explain everything, set you up with the Home Care company, your home nurse program (not always the same company – it wasn’t for me). They will walk you through everything, and make sure that the home care company will have all the supplies you need at your home the same day you’re discharged. If the home care company cannot get to your house, you will not be discharged that day.
Sometimes you’ll meet with a rep from your home care….I personally can’t remember if I met with someone from my home care company or not…it’s all very fuzzy. So, like I said in my last video, if you can have someone with you at this point to help navigate all this stuff with you, like a spouse or a parent, that will make your life much easier. If you don’t have anyone to help you, especially with handling the bills and unexpected expenses, take advantage of the hospital resources and ask to speak to a social worker. They can alert you to any government or community programs that might be able to help you.
There is no shame in taking a part of these programs if you truly need them. That’s what they’re there for. Everyone needs a helping hand once in a while.
When you get home, your home care company will arrive with the equipment you need. For me that was an IV pole, bags, formula, syringes, pads, and a kangaroo joey pump.
Shortly after that, a home nurse came and showed me how to use all the equipment, how to care for the site, etc. She came to see me three times a week for the next few weeks to make sure the stoma was doing alright, that I was doing alright, and that I was using all my equipment properly.
The first few weeks after the tube were really rough for me. It was very hard to tolerate the formula at first. I had horrible acid reflux, I had trouble sleeping because the surgical sites made it hard to get comfortable, I was nauseous and bloated…it was rough. But my system did adjust, and I found the rate that I could tolerate. All the nurses told me that the difference in rate was so negligible that it couldn’t make a difference…obviously these people didn’t have gastroparesis. For me, rate made a huge difference. And when I decided to go slow and steady with my rate and bump it up 1 mL at a time when I felt comfortable, I had a significant improvement.
I no longer see any of my home nurses but I still work with my home infusion company, because they’re the ones who send me refills of my formula, my bags, syringes, etc. I was also set up with dietitian at the home infusion company who handles all my nutrition needs, since you don’t see the hospital nutritionist after your 2 week follow up, and they also have a pharmacist who answers questions about what is and isn’t safe to put through the tube.
So next time we’ll have a little show and tell, and I’ll show you how I hook up to the tube!
In the mean time, I’m sending spoons and love. Take care.
About the Author:
Leah is a 24 year old suburb-of-Philly native. She has gastroparesis, dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.