G-tubes, hospital stays and more

Hopefully ya'll were able to begin to wrap your head around the ketogenic diet process.  Along with this transition we have made the decision to get a feeding tube, g-tube, for Stephen. We came to this decision because on this diet he will need amply liquids, much more than we can sit and give him in a day.  This will be a great solution for us to be able to get liquids in him quickly when needed.  It will also provide us with a mean to get medicines in Stephen if he has a seizure so we aren't playing catch up the next day.  We are still planning on feeding Stephen by mouth and giving him liquids by mouth, the g-tube will just be for supplemental fluids when needed.  

The tube will go right into his stomach and be able to deposit liquids directly to him.

This is what the tube will look like and for the first few months he will have a tube sticking out of his side.  Once he has completely healed from this surgery, we will be able to get a button placed over the tube and he will no longer have to have the tube sticking out. 

Lily Gray refers to this as a balloon hole, thinking that once you open it, it will start to inflate like a balloon :)

So when is all this happening?

This Friday, July 22nd, we will go to Duke Hospital and have the surgery to get the g-tube placed. Stephen will be in the hospital till Saturday.  Then on Monday, July 25th we will go back to the hospital and stay for the week most likely, to start the ketogenic diet process.  During this week, we will be transitioning Stephen and monitoring his levels and also getting intense schooling on the diet.  

This is a big week for us! Oh yeah, and someone has a birthday tomorrow... :)

Keto 101

So as many of you know, we are about to begin the process of transitioning Stephen to the ketogenic diet in hopes to help control his seizures.  We are very excited and thankful that this is an option for us but we are also nervous because this is a HUGE undertaking and change. 


So what is the ketogenic diet?   
The diet is a high-fat, adequate-protein, low-carb and low-sugar diet (similar to the Adkins diet) that has seen great results in the improvement of seizures for kids whose seizures are not being controlled by medicine. 

Many of you know that Stephen currently lives off of carbs.  Most of Stephen's meals are composed of potatoes, noodles, rice etc. because they are easy to mash into a good consistence for Stephen to eat.  This is where the big change comes in! Once we take carbs out of Stephen's diet we will have to be creative in ways to make his food.  His portion sizes are also going to change dramatically. Currently, Stephen eats three times a day, just like everyone else- depending on when he is hungry and what we have going on that day. His typical meal I would say is the average size for a kid around 8-10 years old but that is all about to change.  The average meal size dramatically decreases on the diet because everything is so high in fat and protein. 

This is a sample meal consisting of 2 pieces of bacon, three cherry tomatoes, and 1 cucumber piece and the drink is a whipping cream and butter mixture.

Another big change for us with this diet is that we will have to measure everything out that Stephen is going to eat to the 100th milligram to ensure that he is eating the same amount of carbs. proteins, and fat ratio at each meal. He will continue to eat three times a day but they will be the same three times every day.  The object is to get his ketone level to stay completely level through out the day (similar to a diabetic trying to get their blood sugars level).

As if all of this didn't seem like enough to keep up with, there is also carbs in almost everything you put on or in your body. We have had to change toothpaste, sunscreen, lotions, shampoos, wipes, laundry soap...you name it we've probably had to change it! 

We are happy to make any and all of these changes if they help control Stephen's seizures.  We will be on the diet for a least 3 months to see if they help control things.  After three months if we haven't seen any improvement we can take him off the diet and start transitioning him back (fingers crossed it works though)  

We would love to eventually be able to cut down on medications!  

Please pray for us during this transition and pray that Stephen will do well on the diet and that we see improvement in his seizures.