Thursday, May 27, 2010

A fog

The last few days have been a total fog, we went into surgery hoping for one outcome and we got a call from the OR 2 hours into Kyle's surgery with a different plan. The pledgett/mass of surgical material that was in Kyle's esophagus had attached itself to his liver, stomach and the lower half of his esophagus it was completely embedded and had destroyed the top half of Kyle's stomach. There was no chance to save the tissue and so they had to detach Kyle's esophagus from his stomach and attach the esophagus straight to Kyle's intestines. His stomach is now completely bypassed. This was bad news to us, clearly. The news was shocking at first and then we had a chance to process the news and we are trying very hard to see the positive side of this...he will have NO reflux at all which is really good news for his lungs. We are hoping that this may cut down on his stomach pains (his stomach is still there and does still empty into his intestines) They did put in the J tube so he now has a G tube and a J tube...2 tubes on his tiny belly. His body is very swollen still and we are still struggling with pain issues. He went thru so much, so while we are prepared logically for the pain the reality of the pain is so hard to watch.

We feel overwhelmed and heartbroken that Kyle is in so much pain. We keep hoping that every surgery, every test, every new medication will give our sweet boy some relief....We are keeping that hope and faith alive that this will all be worth it for him....that this is a new beginning for him. The next few days will be rough but Kyle as always continues to amaze us.

XO
K

34 comments:

The Phamily Matriarch said...

He is truly amazing! I so love him...and you all!

XOXO,
J

Weerock said...

He is one strong little boy. He has my heart - you all do.

XOXO
D

Jessica said...

Unreal what your Kyle & your family has gone through. Kyle is TRULY unbelievable. Its amazing how much you can love a little boy you never met but I do. Your family is awesome. Love you guys!!

xoxo
Jessica

Anonymous said...

Kate, wow your head must be spinning...to have something so unexpected happen must be hard to process. You are so strong, it's no wonder that Kyle is such a tough little guy.
Hugs,
Leigh

Mel said...

Much love to Kyle! He is so amazing! XOXO Mel & Family

Jen said...

:( so sorry to read this.. I am behind on blog reading for a while now..we'll be praying for Kyle! ((hugs))

RMmom said...

I am sure the fog will lift soon and that Kyle's pain will decrease. Your little boy and your amazing family deserve that! Hoping for less pain, no fever, and some smiles tomorrow :)

Stacy said...

I wish that the surgery had gone as well as was planned. I'll keep Kyle close in my thoughts and prayers that his swelling will go down and his pain will ease and go away quickly.
Stacy

Heidi said...

Sorry to hear about the complications. Just praying for pain relief, hoping he's more comfortable tonight. Thinking about you all. HUGS and always prayers--
Heidi & Jack.

Brayden'smom said...

Praying for Kyle and your family. Hoping that the doctors can find some pain relief for him.

Shannon said...

Praying for your little guy!!!!!!!

Anonymous said...

If you need ANYTHING - Candy R. has my contact info. I will come if you need . . .

Shelby

Alex, Adrian & Lexis Mommy said...

WE love you KYLE, sweet angel who we admire & love so . Wishing you get well soon & lots of prayers & love. xoxooxox

Alex
Adrian
Alexis

Debbie said...

Kate...
so sorry for all the pain all of you are in...I know how much you are hurting to see your baby hurting and going through yet another surgery.

Please know you are in the thoughts and prayers of so many...those who know you and those who have never met you...so many care.

Deb

PS...
after reading Heidi's blog yesterday, I made the realization Kyle has mito...I had no idea what all his complications and illnesses were stemming from! Changes nothing other than I feel a bit more connected to you...

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Patty, Alex, Adrian Lexis Mommy said...

Kate:

at this point all I can say is that you & your family are so much LOVED & I amkeeping Kyle in our prayers. I can only imagine what you are going thru as well as that awesome boy of you rs. KYLE.

He is a shinning star who always brings light to all of those who meet him & know about him. Please know I am here & for what is worth I know there has to be a way something is gotto give....he is going to be better soon, I am praying & am hopefull.

My heart opens up to yours. although we are very far whatever you may need we are here. I wish we lived closer..so that I may give you a hug to rell you I CARE I LOVE YOU & I AM HERE.

Give KYLE a kiss from me & from Adrian as he keeps taliking about KYLE. XOXOXOXOXO

Patty

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