I’m nervvvous…

  • I’m going to a different hospital three hours away.
  • It’s going to be a new doctor.
  • I’m going to be admitted.
  • There is anesthesia.
  • There is a new tube placement.
  • There is a manometer placement.
  • I will not be allowed to move for 24 hours.
  • I have to consume 400+ calories in less than 30 mins.
  • I am going to be given medicine that I showed an allergy to.
  • If it’s normal than they probably won’t have much to help me.
  • If it’s abnormal, they don’t have great solutions either.
  • All of this in less than 48 hours…

I am going to be getting antroduodenal manometry on Wednesday. I will try to remember to take some pictures of the whole thing and write a post afterwards. Here’s the schedule:

Monday: Clears all day and drive to a hotel near the hospital for the night.
Tuesday: Get endoscopic placement of the manometry tube. Spend the day waking up. Be admitted. Try to sleep that night.
Wednesday: Bright and early they start recording. At 10 am I have to eat the 400 cals. At noon they give me a motility stimulant. At two they give me a different one. The test is over at four. The doc should tell us the results. Then they attempt to put my NJ back in. Then I get discharged. Go to the hotel and sleep overnight.
Thursday: Drive home. Be done.

Random thoughts:

A friend gave me a reusable tourniquet for starting the IV. It is pretty cool! I think these are similar: https://www.amazon.com/Hooshion%C2%AE-Emergency-Tourniquet-Activities-Multi-color/dp/B016B5QN0I/ref=sr_1_2_a_it?ie=UTF8&qid=1526170835&sr=8-2&keywords=reusable%2Btourniquet&th=1

I plan to run an odd mixture of bone broth, collagen, coconut water, and saline through my tube on Monday for some protein and to keep my sodium and fluids up. Here’s my recipe:

3 C bone broth
4 T collagen powder
1 C coconut water
1.5 C water
1 t Himalayan pink salt

That will provide me with:

300 calories
51  grams of protein
2.5 gr sodium
44 ounces of water

…which is pretty good considering the fact that they are clears! (You can tell I spent a lot of time coming up with that recipe.)

 

 

 

I have a really awesome suitcase that I am using to hold my stuff: https://www.amazon.com/dp/B016IO9O9O/ref=twister_B0779B999Z?_encoding=UTF8&psc=1

 

 

 

Of course I will use another one of my awesome enfit tubes! https://www.vitalitymedical.com/corflo-ultra-lite-ng-with-enfit.html It’s the 8 FR. 43 Inch Length 3G wt w/ Stylet.

 

 

 

The long and short of it is that I am just incredibly nervous. I have anestesthia, radiology, new doctor, and admittance, all mixed in to just two days. The good news is, this test could bring me some answers I really need, and help find some treatment to have me feel better! (And then my nervous brain says ‘What if I get a false negative?!?’)

 

 

(That post had no spine and probably didn’t make incredibly much sense, but it was helpful to write down what I am nervous about)

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#chronic, #chronic-illness, #cooking, #dairy-free, #enfit, #feeding-tube, #gastroparesis, #gluten-free, #manometry, #medical, #medical-testing, #nj-tube, #orthostatic-hypotension, #pots, #rare-disease

DO NOT call it ‘formula’ and my other tubie pet peeves

I have no idea why, but I hate it when people call my tube food formula. I guess it’s probably because it sounds like it’s for babies. I know the word formula simply means a formulation of food, but it still really upsets me! Also, I don’t like when people say you are ‘feeding’, because it sounds very animalistic. What do dislike people saying about your tube?

Current running list  of what the tube itself has been called:

Line
Hose
Stick
Strap
Thingy
Yellow strip
Weird thing in your nose
String
Flotation device (no joke – I was in the pool and this older woman comes up to me and asks how it helps me float. I absolutely COULD NOT figure out what she was talking about until she finally said ‘the yellow cord on your face’. I explained to her that it doesn’t help me float, it’s not for swimming at all. She acted like she didn’t believe me.)

And my favorite:
Why do you have a pencil in your nose?

And some sweet little kid even told me:
That looks owy. 🙂

And then of course there is the stares…

#annoying, #chronic, #chronic-illness, #cool, #dairy-free, #enfit, #feeding-tube, #feedingtubeawareness, #gastroparesis, #gluten, #gluten-free, #mast-cells, #mcad, #mcas, #medical, #nj-tube, #orthostatic-hypotension, #pots, #rare-disease, #wheat