how could I forget?

I cannot believe that I forgot what happened last Monday!! Thanks for the reminder, Dad. So here's what happened...

I took off work early to head to an appointment, and I get a phone call from my mom. She was lying Wes down for his nap and happened to notice that his stomach tube wasn't in. Now let me just tell you, there is a balloon inside Wesley's stomach holding that bad boy in place, so coming out is not a small feat unless the ball deflated. Here's a picture of what it looks like (at least its similar to Wesley's):

Now you can see what the whole button generally looked like. Anyway back to the story... Mom drove with Wes to our house to get another mic-key button and I headed to my appointment. I thought that she would just put the button back in and all would be well. I called after I was finished with my meeting, and guess what? Wesley's stomach hole had closed up and the button wouldn't go back in!!

Let me give you a little history here. When we met with the surgeon back in March, we talked about when the stomach tube could come out. Damon and I both wanted it to come out soon, but the surgeon said he wanted another swallow study done in June or July, then the tube could come out. We were also told that it could take a month or two for the hole to completely close, so we decided that we wouldn't want to keep Wes from swimming all summer and would wait until August or so.

Back to Monday...call after call later, we were told to come to the emergency room at the downtown Cincinnati Children's and get it put back in. His surgeon was out of town, so of course we couldn't get a straight answer on whether we could just leave it out. Damon and I talked and wanted it left out, but because the surgeon left in his notes that he wanted it back in, we were stuck with a decision to make. I figured that if the doctor was going to put it back in, then the sooner the better for Wesley's sake. So we headed to the ER (or ED - Emergency Department - as they actually call it). They took us right back after checking in, even before some very sick children, so I was sure they were going to prep Wes to "dilate" and open the hole in his stomach that no longer existed.

Wesley on the car ride to the hospital

(obviously, he forgot where we were going)

Doctor after doctor after nurse came in and talked to us and looked at Wesley's stomach. We kept saying we didn't want it back in, and they kept expressing amazement at how quickly the hole closed with no leakage. Finally a doctor called Wesley's surgeon who said...WE CAN KEEP IT OUT!! He knew we hadn't used the tube in a couple of months, and he was confident that Wes was okay without it.

So now our "safety net" is gone and we're doing just what we were before (feeding Wes only by mouth). It's crazy to think that just one year ago Wes wasn't eating anything in his mouth and was on a feeding pump 24 hours a day. Here's a picture of Wesley with the backpack pump on...

I cannot believe how small and young he was!

So if you're curious what the "hole" looks like (who wouldn't be?!), then there are pictures below, but I have to warn you, they might be a little gross.

WARNING: DON'T LOOK AT THE PICTURES BELOW IF YOU'RE EASILY GROSSED OUT!!!

This picture was taken the day after it came out, but its not red anymore.  The three large whitish scars in a triangular pattern out from the hole are where the stomach tube after surgery last April was stitched into his skin. Needless to say, those tore out on their own, which hurts me to even think about, but Wes didn't complain, so I don't know when they even came out!

This was what it looked like on Friday. The small little white thing on the growth is a piece of skin, at least I think so based on the stretchiness of it. Wes also told me not to pull on it, so I'm guessing it's live tissue.