THIS IS MY STORY . . .

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Aug 14, 2014

Suffice it to say, I am “ER-ed” out…..I just can’t stay away! jk 😉

But first, let me rewind a little bit:

On Thursday, Aug. 7th, I had surgery for a jejunostomy feeding tube placement.  Thankfully, everything went well, but there were still some complications and setbacks.

1. After surgery, my heart rate was way “too high,” as the nurses put it.

2. I had a low grade fever, something the team monitored closely in case it turned into Malignant Hyperthermia (which I’m susceptible to based on genetic testing).

3. I had to spend several long hours in the PACU (post-anesthesia care unit) because of breathing problems which continually set the alarm off.  The team ended up having to use my CPAP machine.

4. I had almost a whole LITER of fluid in my bladder!  The doctor was astounded!  I couldn’t empty it on my own (because I have a neurogenic bladder), so they ended up having to place a Foley catheter—such a painful procedure! x[

5. During surgery, they wanted to place an arterial line in my arm to continually monitor blood gases….my blood work got so out of whack.

6. Over the course of this hospital stay, I had to be given 6 liters of IV fluids because my potassium kept dropping very low!

7. The dr. said I bled a lot during the surgery, even though this was laparoscopic (minimally-invasive).

Anyways, I got home from the hospital Saturday evening!  I was sent home with a long list of medications to take, including some stronger pain meds because having CRPS makes my nervous system more sensitive than normal.

Monday night, I noticed the J-tube site was bleeding a little bit, but I just tucked some gauze near the area and went to bed.  Well, at 1:30 in the morning, I woke up to wet blood on my sheets and pajamas.  I groaned, knowing where this was going to lead me.  My mom called the GI surgery resident on-call, and he said to go to the ER if I was bleeding at the central part of the J-tube.  So to the ER we went!  As you can imagine, this was unwelcome—here I was sleeping peacefully! 😉

When I arrived at the OHSU ER, they got me right in and even put me in the pediatric side (Doernbecher’s) so that I wouldn’t have to wait at all.  It’s a bad sign when the emergency dr. knows you and is familiar with your case.. 😉

The nurses were concerned about all the blood.  The dr. quickly called Surgery to come.  What followed was very unpleasant and so painful!  The dr. washed and cleaned the area aggressively to try and see where the bleeding was coming from.  She had to use scissors to remove thick blood clots….that part wasn’t nice to watch. 😉  The bleeding still kept coming, so she eventually had to suture the place up again.  Thankfully, that did the trick!

I have a follow-up with Surgery on Friday.  They’re going to remove these things at the J-tube site called bolsters (which are currently anchoring my small intestine to the wall of my abdomen).  And in a few weeks, I get to have the tube changed to a “low-profile button.” 🙂

Today I started feeds at a very slow rate.  Here are a couple pics:

This is how I put medications through my tube!

I receive high-calorie formula through the feeding tube. 🙂
Post written byKerissa

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