My Story Part Fourteen: The one where I ended up back at UCSD

Welcome back!  Anthony and I only had a 21 hour day yesterday!  With flight delays and all kinds of stuff, we didn’t end up getting home to Fayetteville until about 1:00 AM!  Is this time change messing with anyone else?  Also, as I’m starting to realize how long this story is (how in the world are we already up to Part 14!?)  I’m thinking I might start sprinkling in some other posts, just for fun!  What do you guys think?

As for today, we’ll continue with this story!

Four days of being home, eating, doing life and feeling pretty decent went by.  Then, I had my first bad night.  It might have been a combination of me “over-doing it,” and eating too much – I couldn’t tell you exactly what triggered it.  But I had my first bad night outside of the hospital. Four days was a pretty good run at it though!

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Cute little succulents I’d gotten from the nursery.

The next morning I woke up feeling okay pain-wise, but knew I needed to lay low that day for sure.  The good news is that it was MTV VMA night!  Even better, it was the iconic Miley Cyrus and Robin Thicke performance!  For dinner, I ate something I thought would be deemed “safe,” but boy was I wrong.  Another rough night of pain ensued.

This pattern continued – there were times when the “safe” foods weren’t all that safe and I’d have a miserable evening and night.  I would wake the following morning feeling pretty okay, but exhausted from the long painful night.  It seemed that rather than living day-to-day not knowing what my body was going to do, it was down to hour-by-hour of not knowing what to expect.

I’d reach the point of calling my doctor to see what they thought about going back to the hospital.  Then things would make a drastic turn and I’d feel like a shining star ready to party!  I finally called and they suggested I try doing just clear liquids.  I did, but mostly took it upon myself to try nothing by mouth for a couple of days.  The back and forth of good and bad just continued on and on.

Two weeks and two days after walking out of the hospital, I was re-admitted.  The vomiting was back, even when I hadn’t eaten anything.  I was to the point where I didn’t care about food because of the way it was making me feel.

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Would you believe that when I was admitted, I had to go through a shared room again?  I was so sad, but I was definitely not feeling as terrible as I had in my first visit.  At least I had TPN on my side and wasn’t nearly as weak and miserable.   Actually, I don’t remember getting to my new shared room or most of my time in it because earlier in the evening in the ER, I had a new NG tube placed.

NG tube placement is traumatic and I don’t ever do so without something to help me get through it. There’s just pretty much no way it’s going to happen if I don’t have some help.  Ativan helps relieve the trauma.  I’d learned through my last NG tube placement that it worked really well to get a dose of Ativan, wait for it to kick in, then, get another dose.

This time, I was SO relaxed that I forgot that I had gotten the second dose.  I was adamant that they hadn’t given it to me and they gave me a third dose!  Now, that’s how to get a girl to forget an entire evening and part of the next day!  But I didn’t remember the tube going down one bit!

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Aunt Judy and I were back at it with our game collection!

But you’d better believe that after I got off that crazy dose of Ativan, I was back to running around that hospital. And being the rebel that I am, I started getting honey packets from the cafeteria and eating them.  I still had my hard candy collection for my nothing by mouth time, but those were starting to get old and honey is basically just swallowing, wouldn’t you say?  (This is 100% not me trying to advise anyone to go against NPO orders.  I’m just telling my story as it happened.)

Nothing much was going on medically, outside of being stuck to the suction wall for days.  But I was so excited, because my friend, Jordan was flying from Dallas to visit me!  Her trip had been planned while I was out of the hospital, but we decided that even a hospital sleep over would be super fun!  I told her we could have broth dates (because that was pretty much all I could eat).  They let me have a clear liquid diet even though I was on suction because it didn’t make that much difference outside of my output being higher.

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Jordan and I had so much fun running around the hospital together, just chatting and giggling in my room.  They rolled in a little bed that she sat up in my room.  It was just a complete blast having her there with me for a few days!

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Jordan took this funny photo of me watching popsicle coming out of my NG tube!

While she was visiting, I was supposed to have an MRI to look at a specific spot that they thought was very narrow and might have been causing all of my troubles.  When I got down to imaging, they offered me a swell appetizer of barium.

If you don’t remember me talking about how I’d never in my life again drink barium contrast because of what it does inside of my gut.  I’ll remind you – it turns to concrete, which is absolutely not okay.  I kindly declined the offer and asked to talk to my doctor before we went any further.

My doctor was so glad I’d spoken up for myself and said no way to the barium and tried to come up with a better imaging plan.

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Little Jo heading back out to Texas!

Basically, I was still doing the same dance that I feel I’ve typed out about forty-seven times.  Disconnect from suction, try clear liquids, and go back to suction.  Sometimes, I’d make to full liquids and go back to suction.  Several sips caused severe discomfort.  At this point, not eating anything at all caused severe discomfort.

As I summarized in the blog that I kept at the time, I had “Three kinds of hurt.”

  1. When I wasn’t allowed to eat, I got terrible acidic and sour stomach feelings.
  2. When I was on clear liquids, I would get extremely bloated and have bad gas pains.
  3. When I was on a soft low residue diet (no fiber, low fat) I’d feel really full and distended with gas pain as well.

So basically, there was no clear answer on what I needed to do to keep my belly happy. And I just kept cycling through the options over and over again.

My dad had sent my laptop from Texas and I was at least able to keep entertained while binge watching “Breaking Bad” for hours!  I also got so bored that I decided to learn the dance to Michael Jackson’s “Thriller” via YouTube.  I tried for a couple hours but people come in and out of your room constantly in a hospital and my dance lessons kept getting interrupted. (After looking for an hour on how copyright and images works, I still have no idea if I can throw a Michael Jackson image here or not!)

After hanging around the hospital for another twenty days, I was told I could go home.  The only tricky thing was that I was told I could go home NPO (nothing by mouth).  I had never dreamed the day would come where I wouldn’t be able to make it up the food ladder and order whatever I wanted from the hospital menu the last day I was there.

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I cried while taking my NG tube out.  Not only because it hurt but because I had a huge fear that I wouldn’t be able to get very far without it.  Even without consuming anything, I had a full belly of stomach acid and whatever else your gut produces involuntarily.

I also left under the impression that I really might be on the track to transplant.  They told me I should probably go and visit some intestinal transplant centers.  At the time, there were twelve in the United States and none of them were even remotely close to Texas but I knew it was important to figure out where my next step was going to happen.

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Finally made it to the beach after two months in California!

I’d purchased my ticket to return to Texas the following week.  I was getting really great care from everyone in California, mostly my Aunt Judy but “Home” is just a feeling you can’t quite find away from your true home.  I missed my friends terribly, my family and my own bed!  My dad flew in to San Diego to travel back to Dallas with me.

Another thing I was super thrilled about was to get home to see that my wish from Make-A-Wish and been granted!  I had wished for an art studio in my backyard and while I had been in California, it had arrived!  I was so excited to get home to get it filled with fun things!

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What’ll happen when I get home to Texas?  Who could ever know!  See y’all here soon!

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2 thoughts on “My Story Part Fourteen: The one where I ended up back at UCSD

    1. Hey Zoe! Great question. I actually do have a g-tube now! Not sure why it took so many years for us to come to that conclusion. Probably due to typically only needing it terribly badly every few months there for the first several years. Plus I was relying on food in addition to TPN for many years. I’m not sure, but I sure am glad I have it now. If you follow for the rest of the story, you’ll see that there ended up being complications in placing it, so I ended up with a draining J-tube initially. But ultimately the G-tube was the only route that was truly going to work effectively. My life has improved significantly with it.

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