I just wanted to let everyone know about our most recent appointments and of Evan’s upcoming surgery. Yes surgery. 😥
On Wednesday morning we met with pediatric surgeon Dr. Downing at Bronson Methodist hospital in Kalamazoo. We were referred to him by our cardiologist Dr. Fountain-Dommer for the installation of a g-tube. I have mixed feelings about him. On one hand he was very knowledgeable, answered all of our questions, spent quite a bit of time with us, and was very nice. On the other hand he clearly didn’t read one shred of Evan’s file as he mentioned running a bunch of tests that Evan had already had. I guess it’s not a big deal; he sees dozens of people a week and can’t possibly read everything nor does he probably need to. I think it’s just one more point of irritation with the hospitals and doctor’s offices. How many times do I have to tell people at these offices the same things over and over? Evan’s medical history, the medications he’s on… Come on, ever heard of a computer? It’s pretty neat, you can share information, buy the latest copy of Dairy Goat Journal, watch live video feeds of bald eagles giving birth to their young high up in their nest, and watch videos of people doing things to themselves that you don’t even want to know is possible. Sorry… rant over, on to what happened at the appointment.
Evan will go in for g-tube surgery on Tuesday November 8th at 7AM. Sarah and I were reluctant when it was first brought to us as a possibility but as the weeks have gone on and we’ve talked to more and more people we feel that it’s the best thing for Evan. There are many drawbacks to the NG tube that Evan currently has and it has become clear that his tolerance for eating orally is not getting any better. If anything it’s getting worse. The last several days his feeds have been almost entirely by tube because he’s refused nearly all attempts at feeding by mouth. I’m afraid he’s already developing an oral aversion because of the tube in his nose/throat. I’ll be happy when it’s gone and I am sure Evan will feel much better as well.
The surgery should only last about 30 minutes but they will keep Evan throughout the day and likely overnight just to make sure that all is well, he’s tolerating his feeds, and to teach us about the tube and pump. Here’s what the surgery consists of:
A small incision will be made in the belly button and a camera will be inserted, another small incision will be made where the port will go. The stomach will be pulled up to the abdominal wall, an incision made into the stomach, and the g-tube inserted. A balloon on the inside portion of the tube will be blown up such that the tube and stomach is held securely to the abdomen. Over time the stomach will adhere permanently to the abdominal wall and may be cut away at a later surgery but is not necessary.
On the outside the tube/button will look like this. It will rotate fairly freely and will be rotated on a regular basis to keep it clean and healthy. It comes about 1/4″ off the surface of the skin. When it’s time to feed the cap is opened and a tube is inserted and locked in place. He can either be fed by gravity like we have been doing with the NG tube, via a syringe by pushing food into his stomach, or with a pump that can perform feeds at regular intervals or continuously overnight. How he’s fed will depend on what the nutritionists would like us to do.
Here is another view of the device: 
The most shocking or disconcerting news that we received was the answer to this question. “Do you expect that Evan would have the g-tube through all of his heart surgeries?” To which Dr. Downing answered, yes. This means that Evan will have the tube until he’s 2-3 years old. That was not what we wanted to hear but after hearing the doctor’s explanation it made sense and I am much more comfortable with it. Just because Evan has the tube does not mean that we need to use it if he starts taking all of his feeds on his own. On the other hand if we need the tube for feeding or medication it will be there, especially following his upcoming surgeries when many heart kids have trouble feeding normally.
We’ve heard from many parents and doctors that the g-tube was the best thing they could have done and they’d wished they did it sooner. I hope we have the same experience with Evan.
Following the appointment with ped’s surgery we met Dr. Loker, one of the other pediatric cardiologist’s at Bronson. We met with him because Dr. Fountain-Dommer was not in the office that day. I got a really good impression of Dr. Loker as well. And….. Evan has gained another 5 ounces!! He’s up to 11 lbs 7.7 ozs!! Hooray.
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