Friday, November 26, 2010

update

It's been hard to post and update. I'm not sure if it's exhaustion or the lack of good news. It's my nature to always try to find some good in the bad. I think if I don't find some good something will snap. When I can't find good I go silent and withdraw. I hate that feeling. Like I said in the last post, while Kyle's surgery is a success in the sense of everything they needed to do surgically was done, it is not a success in what we so needed to be successful. The amount of bile that is still pushing into his esophagus is painful and even though it's still on suction 24 hours a day he is still struggling with pain.

So, our new plan. On Tuesday Kyle will head back to the OR to place a pacer(a temporary pacer a permanent one will not be placed unless we see it working) in his small bowel. While gastric pacing is more common we know that trying to pace Kyle's stomach will not do us any good. So the surgeon is going to place one in his small bowel. Not done very much but we are willing to try anything at this point. It is our second to last option before a transplant. The word transplant is being said with much more frequency around us and it's brutal to hear. But that's a post for another day.

For now we are enjoying the kids being here for a few days and I am holding them and loving on them every single second. It was a brutal drive for them but Mark was amazing and it's been so uplifting to have them here. Hard for them to see Kyle in pain but they are handling it so well....we have had some talks with them and they know that him and I will be here for a while. They are so strong and so brave. I'm so proud of them.

XOOX
K

11 comments:

Sarah said...

I am so sorry that this is not working out for Kyle the way we all wanted it to :( I hope the new pacer will help. Our GIs here were talking about that.

Kisses for Kyle from California!

Shari said...

I pray the pacer will work and Kyle will get some well-deserved relief. He is such a fighter! You are on my mind daily! Hang in there!

Lauren said...

Kate-

We continue to send our love to your family each and every day and hope with all our hope that the good news starts to outweigh the difficult soon.

Hugs-
Lauren

And Birthday wishes are in order? Happy Birthday Momma! You're amazing!

MJ said...

I pray that the surgery will give Kyle some relief.

I pray for you each day. I think that you are an amazing person.

Debbie said...

I can't believe all you have endured since I have been following you and your darling son.
Please know you are in my thoughts and prayers for healing and relief.

Hugs...Deb

Ash said...

I hope and will pray that this next surgery will offer the much needed relief of pain for Kyle (and you)! And I'm very sorry the original surgery didn't offer the pain relief that everyone was hoping for.

Enjoy snuggling your little ones while they're visiting!

Leigh, Tucker's Mom said...

Kate,
You are always in my thoughts, I am sorry that the surgery wasn't a success like you had hoped for.
Hugs,
Leigh

Jessica said...

Friend, it's not easy being a medical mommy, we have to go through much suffering and much pain as our hearts break, and dreams fall apart but NEVER forget that you are an amazing mama! Kyle is lucky. He fights because he sees the fight in you. Sending many blessings and positive thoughts your way. And I hope to hear of great news soon.

MJ said...

I am thinking of you and keeping you in my prayers.

Anonymous said...

The Portland Press Herald is trying to get a hold of the family. If they see this, could they possibly contact Melanie Creamer at 791-6361.

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