Pulled the Plug

So, yesterday was the day, the plug was pulled! We headed in to Surgery Clinic for our follow up with Dr. Sigalet since Taylor's g-tube surgery on March 7th. He was very pleased with how the site looked, and said it's healed very nicely. Next step was literally to pull the plug, he had to remove the first-line g-tube and then replace it with a skin level device. I was somewhat torn about this appointment. I had been anxiously awaiting it as it would mean that there would no longer be a tube dangling out of Taylor's belly. But on the flip side, as the appointment got closer I started to dread it because of how bad it was going to be for Taylor when he pulled it out. Much to my surprise, the worst part was the freezing. He put the needle in 5 spots around the site on Taylor's belly and she was in serious distress. You know that awful hold-your-breath cry, followed by big screams and tears flowing. Poor little darling. Then he waited a minute for the freezing to kick in, counted to three, and pulled the tube out. Here's a picture of it (cleaned up), the rounded mushroom cap is the part that was inside, up against the wall of the stomach, and the oblong bolster is what was on the outside against her skin, with the tube dangling out. The mushroom cap is fairly soft plastic, but it still had to come out a hole the size of the tubing. Ouch.

As quickly as the tube was out, the measuring device was put in so that they could determine the size of MIC-KEY that Taylor needed (skin-level g-tube).

The next photo shows what the measuring device looks like. They put the tubing down the hole in Taylor's belly. Then, using one of the ports at the other end they inject water, and the end that is in Taylor's stomach fills up like a balloon. It is then pulled up so that the balloon is right up against her stomach wall, and on the outside, they push the white disk down until it is a dime's width away from her skin. The ruler markings on the tubing told them that the size she needed was 1.5cm.

Measuring device

I was able to get a quick photo of the hole in Taylor's belly when they pulled the measuring device out. It's not pretty, that's for sure, but it's not as stomach churning as I expected it to be.

The MIC-KEY g-tube is also a balloon device. So in it went, and water was injected in the special port to fill the balloon right away and secure the tube.

They cleaned her up and put some gauze around the site to soak up any more blood that may seep over the next 24 hours. Here it is, Taylor's new button...

Teaching wasn't too complicated. Only change to the way we hook up her feeds is the addition of a connector that locks onto the button, and the feeding bag hooks into the new connector. We were also taught how to vent if Taylor's got a lot of gas in her belly, there's a separate connector for that, then you just attach an empty 60cc syringe and let the gas bubbles out.

Once a week we have to clean the button of any formula buildup. We inject 1ml of club soda every minute for 10 minutes, and the bubbles do the work. Pretty simple.

Once a week we also need to check the balloon. We put an empty syringe on the balloon port and draw the water out of the balloon, keeping one hand firmly on the button so that it doesn't come out! Then we take a second syringe with 5ml water in it, attach it to the balloon port and inject the water to refill the balloon. The reason for this is that the balloons do fail over time, and if we notice that we aren't getting the 5ml out of the balloon anymore, it's likely time to replace the button.

And next time we do it ourselves. Yes, we will remove the button, see the open hole into her stomach, put in a new one and inflate the balloon. These MIC-KEY devices generally last about 8 months, so it's not like we have to change it very regularly. Good grief, yet another thing that is shocking to think we have to do ourselves. But we will...because we're capable. Who would have thought?! Oh the things we have learned!

Teaching, tube change, and all...we were in and out of Surgery Clinic within an hour. Nice and quick. We got home and in no time Taylor rolled onto her tummy. Wow. This girl continues to amaze me. Tube-just-pulled-out-blood-everywhere-screaming-in-pain and she's already comfortable enough to be on her tummy. Supergirl indeed. Mommy's so proud.