Today Is My 2 Year Tubie-Versary!

Just realizing today is my 2 year tubie-versary 🙂 Lately I’ve been finding myself discouraged by setbacks…but looking at these pictures I cannot help but smile seeing how far I’ve come since then! Love that my dad captured the pure joy on my face when I woke up from anesthesia just in time for pet therapy (and before I realized just how tough my recovery would actually be, lol). Here’s to pressing on & continuing to make the most of the life I’ve been given!

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REX Hospital (Mis)Adventures

IMG_3409So, here’s a little story about when I went to REX hospital to get a new feeding tube placed after losing mine earlier this week.

First, a little backstory: When it fell out (more like when it was RIPPED out as I fell down the stairs), I covered the stoma in a sterile dressing and headed straight to WakeMed North where I met Hillary. I straight up asked the nurses there if this was something they were equip to handle, and they suggested we head to REX instead where my surgery was done. I thought that sounded like a great idea, and so off we went.

We waited in the REX ER for hours before they brought me back. It was another two hours of lying in the bed until they informed us they had no idea what to do and that I should just call my surgeon in the morning. I asked if they would contact the on-call surgeon or at least give me something to stick in my stoma so my newly-established tract would not close, but they offered no help and said it should be fine. New to the feeding tube world, I did not really question their judgement. I mean, these were doctors…at the hospital in which I had my surgery…they knew what they were doing, right? So off we went back to College Inn. In the morning, I called my surgeon’s office, and was scheduled to go to Interventional Radiology today (July 30th) so they could slide a new tube in.

Upon arriving at the hospital, they got me registered, started an IV, hooked me up to all the monitors, and rolled me in to the ‘operating’ room. I was transported on to the table and strapped down. It wasn’t until that point that someone decided to remove the bandage to see what they would be working with (aka my stoma/intestinal tract). The doctor carefully peeled back the bandage…and then I heard him curse. He began yelling at the nurses and other physicians & technicians in the room, demanding to know why no one had checked this before.

The stoma and tract was so new, it had completely closed up!

Guess what that means for me? Yet another major laparoscopic j-tube surgery, as if the first one never happened at all. I have to go through it all over again, just because the ER wouldn’t help and thought it would be “okay” despite my objections and pleading for a second opinion.

The above picture is our “wtf, really?” faces from when we got back in the car after this whole ordeal. I tried to laugh and joke about it at first, but now that I’m back at the apartment and alone, I cannot help but cry. The fun just never ends…

Last Few Days Tube Free…

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On Monday, I am having surgery to have a GJ feeding tube placed. I will officially be a Super Tubie like so many of my beautiful fighter friends.  I am nervous (to say the least), but I am very excited to gain back some weight and strength. Rough infusion today as I randomly started vomiting and then had a full-blown dystonic reaction– humiliating. But I love my infusion nurses and the amazing volunteers here! Mrs. Paula gave me this little bear and a hug and told me she has been praying for me. Really helped my heart and made me smile so big! Things have been difficult and scary lately, but I am so incredibly blessed. ❤

109lbs

This flare has been unrelenting & it’s starting to show a bit.  Down another 2 lbs. My gastroparesis has been awful & I’ve been praying to the porcelain gods a lot more than usual lately…and throwing up some blood. I should probably get that checked out, but it’s bright red as opposed to the coffee grounds they generally tell you to look out for. I don’t know. I honestly wouldn’t be surprised if the blood is actually coming from my throat. All this vomiting & retching has my poor throat in really rough shape. 😦 It always hurts & I am constantly losing my voice— IMG_0471but I digress.

Despite all this, I’m doing my absolute best to get in enough calories. I try so, so very hard.  I consume 3 Ensure ‘meal replacement’ drinks a day in addition to my usual diet (plus extra snacking), but I just can’t seem to gain weight. I’ve been really thin ever since I got sick when I was 17…that’s nothing new…but I was doing well with holding my weight between 112-116 for a few months. Oy vey.

The student health center thinks I’m anorexic which is definitely not the case. It’s hard to convince them otherwise when my blood work has so off (& urinalysis showing a pretty decent amount ketones)…but Brittany offered to show them the video of me eating an entire gluten free pizza in less than an hour.. 😉 #ChubbyChasing