Sunday, September 29, 2013

A summary of my week of HOPE

So for those of you that don't know/didn't know, I was admitted to IU Med Center last week for 4 days for some pretty extensive testing.

I've been having issues since last November of every time I eat, I will either pass out or HAVE to fall asleep. Like it's not a choice. You can't keep me awake for anything. Every single time I eat. Or should I say ate.

After a lot of complaining and protesting and telling people that seriously, this is not ok, and it's really affecting my quality of life and my ability to succeed in school I fired my GI doc because he just wasn't doing anything. So approximately 5 days after I fired my GI doc I get a phone call from his nurse basically saying you wanted us to do something, we're doing it. We've suspected my eating is not related to GI at all, but a potential mitochondrial disorder, but the earliest I could get in with the geneticist was December 30th. We also have suspected that if we feed me through a feeding tube and by pass food going past my vagus nerve then I won't have to sleep after I eat because it won't be stimulating my autonomic nervous system, or that I am just plain out using too much energy digesting my food from the probable mitochondrial disorder I have so if I'm not digesting food because the tube feed is already digested for me I won't have to sleep either.

So my GI doc got me admitted for 5-7 days, which ended up being 4, which will really end up being 7 in the long run days in the middle of the semester and nearly got me kicked out of my program at school.

Our plan? Feed me through an NJ tube to see if that alleviates my symptoms while I'm hooked up to a telemetry pack and get my blood pressure taken every 15 minutes. And have that geneticist that I wasn't supposed to see until December come and run 5,000,000 tests on me and ask me 10,000,000 questions. The only reason I agreed to do it in the middle of the semester was because of the geneticist. Honestly. Oh, and because it was like God told me I couldn't not go.

I've been waiting for this extent of testing for at least the past 5 months and it never came together. And now it did. Randomly and suddenly. And I got the phone call the day we were talking about listening to the Holy Spirit telling you what to do and to do what He is telling you to do and right before the sermon on Hope. Which is kind of my thing.

So I went to the hospital. After some scheduling snafoos, some room snafoos, and some more scheduling snafoos. I went down to get my NJ tube and I came back like this.
Then they started feeding me through the tube. Then they decided to have a speech therapist come see me to talk about my swallowing. Then she decided to try to feed me, but my throat hurt really bad from just getting a tube shoved up my nose, down my throat, into my jejunum. So my swallowing was even worse, so I got to do another barium swallow study, when I just had one 2 weeks ago. And again it was normal, of course.

Somewhere in here I also got a picc line since I have no veins (which they didn't let me keep and I'm super bummed about), got some saline started, got about 30 tubes of blood drawn.

We had to not let me eat so we could see if the tube feed was making me better or not and if you've never been tube fed before you wouldn't know this, but you have to work up to your goal rate, so I was basically only getting 240 calories a day for 2 of the days, and still only made it up to about 880, maybe 1100 calories a day the whole time I was in the hospital.

Tuesday I started saying that the tube feed was giving me lots of energy and I felt like I was more awake than normal. So then a neurologist shows up and thinks this (along with some other issues I have) are weird of course so he wants to do a 24 hour EEG and telemetry. So then I got hooked up to this contraption

 And ended up looking like this:
Then I got really bored because I couldn't get out of bed at all and they didn't want me to move much so it didn't interfere with the results of my test, but ironically the tube feed formula was really kicking in so I had tons of energy and spunk so I took pictures of my Saline and my "Food" and did a whole bunch of homework while I tried to drown out my really, really annoying roommate.

Then they made me eat to see what would happen if I ate "real food" since I was doing so well on the tube feedings so I ordered some food, ate it, and immediately fell asleep. So then the decision was made that I would become a tubie. But I will also be able to eat and drink normally too, when I want to as long as I'm in a safe place so I can sleep. So then I waited around to get my J-tube surgery and while they were doing that they were also going to do a small intestine biopsy, stomach biopsy, and thigh muscle biopsy to get more tests for the mitochondrial disorders.

I ended up not getting any of my tests back for the mitochondrial disorders yet (they take weeks to get back). My EEG and my telemetry stuff both show I'm not having seizures or that it's not my dysautonomia that is making me sleep when I eat.

My surgery ended up not being able to be done last week because of the surgeons schedule. So I will be having the surgery done on Wednesday of this week.

I'm a little nervous, and it's a big life adjustment. But I've just spent 2 full days awake which is the first time in almost a year and today I even felt like crap, but I didn't need to take a nap. So I will take it. I think. Though I'm really not excited about it. At all. But no one asked me. Well 3 people did, but none of them were my doctors or nurses or dietitians. So I'm a tubie now, I've got my NJ tube until my surgery Wednesday, then I'll have my J tube, and I'm hoping it's a lot better then the NJ tube. Now I'm gonna go to bed and try to sleep while I "eat" attached to my IV pole so I can have some energy tomorrow. Now there's some HOPE for you. Energy. Life. Despite the illness.


  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

    1. I sent a message to your google account. Thanks.