12 January 2010

Here I go again...

It has been talked about so long that I know you all think we must be crazy.

First we are going with a g-tube, then we aren't. Then we are again. And then we aren't. The decision to get Liam a gastronomy tube has been more complex than I thought. Not only have we had the medical side play into our choice, we have had the emotional factor play a very prominent decision in whether to go ahead with the surgery or not.

Shawn and I have been adamantly opposed to the g-tube from the very beginning. For us, it has almost been like a sign of defeat to say that he needs one. And he hasn't actually needed one as of yet. His situation has not been so severe that his life depended on him getting one. Although he quit drinking from a bottle last May, he has continued to drink from a syringe keeping his weight on the rise and the g-tube in the back of our minds.

Back in December we had made the decision to go ahead with the tube because Liam was having some feeding issues again. When I called our GI, the earliest appointment they had available wasn't until January 21st. I went ahead and scheduled it for then.

Now, as the time has approached, Shawn and I have greatly questioned the need for it. And last weekend I had this realization occur; we were planning on doing a surgical procedure in order to take the load off of Liam's mouth with nothing in place to help teach him how to eat properly once the tube was in. So, what was the point?

I talked to our OT and vision teacher (she greatly wants Liam to enjoy eating, which he doesn't care to do yet) and told them my fears. Why do surgery if nothing is going to change? So, Kathleen, my OT, got right to work on trying to figure out what needed to be done to help Liam learn to eat right once he got the tube. She made numerous calls to see if she could get the answers I was looking for. One of the places she called was the Chapel Hill feeding team who saw Liam 5 months ago. Granted, they see a lot of kids so they wouldn't remember Liam specifically, but they do see a lot of kids. Because they are in the trenches with these kiddoes and work very closely with the GI department they have a lot of experience with kids like Liam. Kathleen asked them if, with their experience, they could see Liam's behavioral issues getting fixed with out getting a g-tube. In their opinion, the answer was no.

Because Liam drinks from a syringe and because he does eat from a spoon and take in solids, we have been able to just coast along where we are. We had a weight check today and because Liam's reflux has been under control and because we have been able to increase his amount of food at each setting, he has gained a whole pound since our last appointment. He's now 22.1 lbs. That's a great weight and not one that sends alarms ringing sounding the call that this malnourished kid needs a g-tube. Far from it. But, Liam's behavior issues with feedings are what has brought us again to the brink of surgery for Liam. Here's why:

All of Liam's nutrition comes in through his mouth. But, he doesn't do it properly. He gags when he sees a syringe because he knows what is coming. He gags when you first put milk in his mouth even though we've been doing this numerous times a day for 8 months. He pushes his food out with his tongue when he eats solids. All of these bad behaviors are fixable with proper oral motor therapy, speech therapy, OT, etc... But, because he uses his mouth for total nutritional intake, we have to make him take a certain amount of calories each day. We can't focus on whether he likes this food or that one. We can't focus on whether he took three good sips of milk from a cup. Because whether he does good eating or drinking isn't the point right now, we still have to get the rest of those calories in somehow. It is much much easier to try to teach him to eat properly if all of the pressure is removed. He can eat a few good bites and be done. He can drink a few sips and be done. He can learn to enjoy food on his own time and in the proper way.

Because his feeding issues have now come down to learning the proper way with out pressure or fear, learning proper oral skills and eventually being a self feeder, we have decided we are going to go ahead with the surgery. Once we get past the issue of the surgery, I hope it will be a big blessing for Liam to not have to lay down and see me coming with a syringe full of milk and gag. And I hope that Liam will start to enjoy food, not just accept it as inevitable. And I pray that he will be able to get the help he needs to learn how to eat and drink right.

One thing through all of this that I am excited about is that Liam is now going to be able to get speech therapy for the first time. I have wanted speech for a long time and it had to come down to surgery for him to get it. I guess we are no longer going to cruise. We are going to go full steam ahead. ; )

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