Monday, September 5, 2011

Introducing Perry, my port. On to plan "F" let's hope it works!

After jumping through what seems like a million hoops, and going in constant circles we finally have a game plan to get my GI craziness sorted. We're on to plan "F". Part of that plan includes a port for hydration until I get the Nissen Fundoplication. After the surgery, I'll be able to use Jerome again, but he'll be a g-tube.

I had a consult with a thoracic surgeon a couple weeks ago, and luckily it went really well. I'm not going to get into it, but he got to see me when I was at my best. I was hooked up the Joey-pump and refluxing like crazy, had a killer headache and my vitals were all over the place. Based on my long and complex GI history, paired with everything else he thought it would be in my best interest to see what he could do to improve my quality of life. We're going to re-do a whole bunch of my old tests, and do some new ones so he knows exactly what's going on with me. On the way home from one of my appointments, Jerome's balloon popped so he needed to be replaced asap.

Getting Perry put in and Jerome replaced was a bit of an ordeal. I had a date booked to get Perry placed and Jerome replaced, and was called the night before saying they were going to cancel because I was supposed to have blood-work done before hand. There was no way in hell I was going to let that happen. Jerome had been sticking out and was painful for 2 days already, I didn't want to risk infection and the thought of multiple attempts to get an IV going wasn't something I could deal with anymore. It was then decided that I'd to the ER stupid early, so they could do the blood-work and save the appointment. By then it needed to be a 2 in 1 procedure and I was at the end of my rope. Luckily the ER staff were fantastic, I got fluids, blood-work sent off and the appointment was saved!

Because of my awesome body, the surgeon had a hard time getting Perry in and Jerome out. I was given an insane amount of locals and sedatives, none of which really worked. I could feel everything they were doing and it was effing painful, especially when they had to really dig at my jugular vein. It seemed to surprise everyone that despite being given so many drugs I carried on a conversation with the team in IR the whole time, then walked out of the room like nothing had happened. My iron liver isn't just from practice...

Getting Perry put in was also an opportunity for me to face some big fears and do some growing. I have some major trust issues, especially when at the hospital. Lack of trust is also another reason why I don't sleep when I'm there, and am always hyper-vigilant. I knew the 2 in 1 would be a lot for me to handle, so I swallowed my pride, fulfilled my end of a bendy friend pact and asked for help. I was very lucky to have a friend who knows her stuff come with me. She knew when I needed something, didn't smother me, and made sure I was comfortable both physically and emotionally. It was the first time I've ever felt safe enough to completely let my guard down, and just be. She took incredible care of me and is officially the first person I've let take care of, and put meds through Jerome. I'm so happy and thankful that she came.

This was taken right after I realized that J popped his balloon. A mic-key button is supposed to last anywhere from 3-8 mts. Jerome lasted 5 so I can't complain.

Because we replaced Jerome last minute, there wasn't enough time to get funding approval for the mic-key button. It's back to the penis Jerome until the fundo when we'll put the button back. Notice it's twisted to the side, yeah I can't untwist it. Constant tape rash again, yes please! I hate,hate,hate this tube.

Perry in all of his glory. My boob is so itchy and bruised. I'm hoping we'll be good friends and he keeps me out of the hospital.

No more IV's for a while, Perry will be taking one for the team. I really won't miss being poked about 9 times to find a vein for it to only last a day or two.

Jack-Jack the healing dog. He always knows when someone isn't feeling well and gives the best doggy hugs. When I came home he wouldn't leave me, and sat beside me with a look of concern in his eyes during the post-op barf-fest.

"I apparently provided 3 hours of entertainment and a sing-a-long during my MRIs. Everything fromKid Rock and Michael Jackson to a stirring rendition of Candle In the Wind (complete with alternate lyrics and giggles from the awesomest and extremely cute rad tech)."

"So... would the MRI pics of the inside of my brain be considered zombie porn...?"



  1. how much do we all love you. so much it can't be measured to infinity! xo

  2. Glad to see you back, I have been worried, hope plan F goes to plan. Bendy solidarity! xx

  3. you are so brave. hope your health picks up a little soon. xxxxxx