G-Tube

I'm writing from Children's Hospital the night before Soren's surgery for his G-Tube. We came in a day early so that Soren could get IV fluids the night before his surgery. Like any other surgery patient, Soren won't be allowed to eat or drink anything after midnight tonight. But because Soren is on the Keto Diet, it's important to make sure that he is well-hydrated prior to his surgery. This will help prevent seizures tomorrow and help him through being "food-free" tomorrow.

I would explain the whole thing to you all, but quite honestly, it's all way more complicated than I can understand. The best I can understand is that Soren has to have specific IV fluids to make sure he's hydrated but also to make sure that he isn't thrown out of Ketosis. So (and I'm hoping I'm getting this right) there will be a certain level of glucose, but not as high as a patient NOT on the Keto Diet would get. The nurses will be checking Soren's glucose level to make sure he's a-okay.

After the G-Tube is put in, we will give him his Keto formula through the G-Tube. At first, this will be half-strength and then we will build up once he seems ready.

About the G-Tube and our decision to put it in. This has been a long and hard decision that we've debated for years. When Soren started the Keto Diet over a year ago, we started thinking about it all the more. One of the challenges with the Keto Diet is that you have to get every bit of food and drink in for it to be balanced and thus to control the seizures. Plus, when Soren started the diet, we had to add more fluids to his daily intake because it is a high-fat diet. We have to make sure that fat is moving through him and not clogging up the system.

Soren has always been a good eater. BUT when he doesn't feel like eating, he defiantly holds the food in his mouth and then dribbles it out. With the Keto Diet, this can get REALLY frustrating. When this happens, feeding him can take forever. Also, Soren's never developed the skill to feed himself or to drink from a cup. He can only drink from a bottle that someone feeds him (he doesn't hold it himself). So, now that Soren is 8 years old, holding and feeding him has become really physically challenging on my body. During the times that Soren chooses not to eat solid food, I feed him his diet via formula through a bottle. But sometimes he doesn't even feel like drinking and dribbles that out as well.

Add on top of that trying to get his meds in which are essential. And if Soren is sick getting fluids into him is even more important yet even more difficult!

So, we finally came to the conclusion that we had to get Soren a G-Tube. Part of the reason this is hard is because, other than his seizures, Soren's a really healthy kid. The thought of putting something foreign in his perfect little body was really hard for us. Plus, we've heard both good and bad stories about the G-Tube. With a foreign object, there is always risk of infection. Also, if we don't continue to feed him by mouth regularly he can lose that skill. (So we plan to feed him regularly, but give him liquids via the G-Tube.)

But, finally, the good outweighed the bad, and we decided to do the surgery. It's worked out well that he's having it right before Winter Break, so we'll have that time to learn about the G-Tube and practice with it before Soren goes back to school. I know his teacher and aids will do a great job helping him with it. Overall, our goal is life improvement for everyone involved--Soren and us.

Please think good thoughts for us as we venture into this next stage of our journey with Soren.

Amy