Surgery scheduled

IMG_5245Confession, faithful blog readers. I have been withholding information from you while waiting for the full story.

So here’s the news. Patrick’s doctors here and his doctors in Seattle conferenced a couple of weeks ago. When we saw Dr. Jackson last, he told us that they had agreed on recommending that we go forward with surgery for him. And so, we made an appointment with Patrick’s surgeon here and finally were able to see him Friday. That’s the final meeting we were waiting before before we brought the news to our faithful online following.

Patrick is scheduled for plication of his duodenum on September 12th.

This is the surgery I told you was proposed back when we met with the team in Seattle. They are going to go in an taper his small intestine to make it more narrow. They’ll run a row of staples down one side and then trim off that excess. The objective is to make a narrower duodenum that better fits the colon. If the fit is better, we hope that it will be able to contract (parastalse) better and bile can move through as stool instead of backing into his stomach to be drained.

It will be a long surgery, simply because Patrick’s insides are surely scarred and will take some effort to sort out.

I was pretty nervous coming home from the appointment with the surgeon. I absolutely love Dr. Rollins because he is so honest with us. He doesn’t take unnecessary risks and really cares about Patrick as a person, not just a patient. So he took time to make sure that we understood that we really do have a choice in this. This is not a mandatory or life-saving surgery.

It is simply something that we hope will help Patrick to eat more, vomit less, and overall be more comfortable.

And we want him to be able to enjoy life to the fullest extent possible.

I guess I must have needed a reminder of why this surgery would be helpful, though. So, Saturday morning I was woken at 6:30 by the sound of Patrick moaning in bed. Just after 7, it started to sound as though he was trying not to throw up.

I went in to find him completely tangled in his g-tube. The twisting was probably enough to stop any flow from the tube, but to boot, it was clogged. In trying to get him untangled to find the end and fix the clog, I moved Patrick the wrong way. That was one thing too many and he started throwing up — and couldn’t stop.  Finally, after what seemed like an eternity, I was able to get him sorted out enough to get the drain flowing again and he settled down.

Patrick crossed the 2 liter threshhold yesterday for the first time ever. I drained over 2 liters of fluid from his stomach and replaced it with IV fluids.

He was up at 3 a.m. because his tube stopped flowing again and I spent from 4 a.m. to 6 a.m. in his room last night making sure his stomach really, truly was empty and running replacement fluids to keep him from getting dehydrated.

Today, we started antibiotics again, stopped every hour or two to drain his stomach, ran fluids almost constantly, and changed out his button in case that was the cause of the plugged tubes. (Changing the button is so uncomfortable for Patrick that he literally just breaks down every time we do it, so this should give you an idea of just how serious this problem has gotten.)

Anyway – it’s been quite the day and a good reminder of just why we started talking about this surgery in the first place.

Let’s see, what else should you know about the surgery? Patrick will probably spend at least a week in the hospital allowing his incisions to heal and waiting for his bowels to start working again. Then, he’ll need another pretty restful week at home. It will be a total of 4 weeks before he can do any “heavy lifting”.

Until the 12th, I’ve declared this the month of Patrick. We are going to throw in all the end of summer fun as possible while he’s feeling good and the weather is nice. Yes, we did additionally plan the surgery one week later than necessary simply to make sure that Patrick got to go to the State Fair.

P.S. Isn’t Patrick handsome in his new suit?

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