STEPHEN'S HOME!

We are so happy to say that our sweet Stephen is finally home!! Even though he was only in the hospital for 1 night it seemed like an eternity at home without him (says Lily Gray)

We were able to leave this morning, a miracle by hospital standards- 11am!  Thanks to Mommy pushing the doctors to get the paperwork done.  Dr. Rhinstein, the GI doc who did Stephen's surgery, says that everything look great and Stephen's incision site looks wonderful!  He seems to be in little to no pain today, thank goodness, and we were more than ready to be home.  Before we left the hospital Stephen had a very special visitor come to see him. 

Lily Gray came to the hospital armed with gifts for her sweet brother to brighten up his day! 

 Showing Stephen his card

Reading the card to Stephen.

This was Lily Gray's first time ever coming to the hospital to see her brother. She was so interested and excited to see everything and learn how everything works- she is so protective over Stephen and it warmed her heart, and ours, to see them so happy together.

Stephen was able to show Lily Gray his new feeding tube and teach her how to use it, we are happy to report that Lily Gray gave Stephen some water this afternoon in his new tube! She is such a great helper! 

 Stephen gave Lily Gray a quick tour around the children's ward before we packed up our things and headed home. 

We are so happy to be home for the weekend.  We will head back to Duke on Monday morning to start Stephen on the ketogenic diet but until then...

 Stephen says, "Good-bye DUKE!"

One last special note:

  Lily Gray wants to send a great big, giant hug to her Nan Nan for coming and spending some time in Raleigh with her. She loved having you here and can't wait for you to come back.  We love you Nan Nan! :)

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... :)