Wednesday, May 5, 2010

Kyle and surgery

Yesterday was our last GI appt before Kyle's big surgery at the end of the month. It was emotional....our GI is amazing and she always fights for the best for Kyle, I trust her fully and her advice and opinion matter greatly to us. She's nervous about Kyle's surgery....we all are.

Kyle's surgery will have 3 parts to it, he's getting a permanent J tube, which will be right below his G tube, at this point the J tube is our only chance of getting Kyle off the TPN. His PICC line will be removed and a central line will be put back in. We have mixed feelings on this, I like working with the central line better (it's more secure) Kyle has a bad habit of getting infections with his central lines. So we'll have to see how this one goes. The third part of his surgery is his esophagus, he has a fistula (two tracks) that leads into his stomach, so instead of having one opening into his belly he now has two. This is from surgical material that eroded his esophagus and has planted itself inside of his esophagus instead of on the outside. This is pretty major and could cause the most complications. He could lose part of his esophagus. I feel sick over this and I am very concerned about this part of his surgery.

We started talking to Kyle this morning, just casually that he will have surgery soon and will have two tubes instead of just one, of course that sweet boy just wants to know if the surgery will make his belly stop hurting...he continues to amaze me with his strength and spirit. After 13 surgeries he would have every right to pitch a fit and be upset....but not our Kyle....his eyes were so bright this morning....amazing how you can get strength from the littlest person. I am so proud of him.

In other news, we did our March for Babies on was beyond amazing. Because of so many of you I passed my goal and it felt so good. We walked with family and friends....who I hope know how much I appreciated them coming out early on a Sunday and walking 5 miles! :)

I am attaching a picture of our shirts, we are starting a new fundraising for the March of Dimes Share your story website and Angel Flights, all our proceeds will be split between these two charities, if your interested in a shirt.... you can order one at, they are 25.00 and shipping is included, please include your address and size of shirt (we have all sizes)...



Stacy said...

I'll be keeping Kyle and your whole family in my thoughts and prayers in the weeks to come. I hope all parts of his surgery goes well and he is able to get off of the TPN. Big sounds like such a little trooper, it never fails to amaze me how brave he is through everything he is going through. So glad that your walk went well!

Lauren said...

xoxoxo. Seriously I can't wait to sport my Kyle shirt out here and use it as an excuse to tell everyone I meet about this amazing kiddo named Kyle and his most wonderful family... which I do anyway.. now I'll just have an excuse ;)

Always thinking of you guys,