Friday, January 8, 2010

deep breath

I finally had a chance today to talk to Kyle's primary GI specialist here, it left me feeling anxious and unsettled. While both Mark and I know that Kyle has gotten worse it's hard to hear that from her. Her recommendation is to bypass Tufts...(she doesn't feel like they have the surgical staff to take care of Kyle) and move directly to either Cincinnati Children's or Columbus Children's. Both these hospitals can cover all his issues and hopefully with less delay. She wants Mark and I to research them both and let her know Monday which we would prefer...she wants to meet next week without Kyle to talk about how best to care for him here until we can get to one of these hospitals. She also mentioned talking about his advanced directives, and while he's not even close to needing that in our opinion she thinks it's important to have everything covered. She wanted me to know this wouldn't be a quick trip down, that they'll want all their own tests..I hate that he'll have to go thru more to get answers but at this point we don't have a choice we can't keep going in this direction. She feels strongly that the surgical pledgett that's in his esophagus is a problem and she wants that further discussed. She's afraid it's contributing to his on going line infections.
She wanted me to know that she knows this will be hard on us but her fear is that if we don't do something we'll run out of time. I made it clear to her that we'll do whatever it takes, wherever we need to go we'll go...I don't know how I'll explain this to Alex and Jack...or even more what I'll do with them while we are gone...I feel sick over this....but I know that we'll figure it all out.

I keep promising pictures! I swear they are coming! ;) Tonight...I'm on it!



girlyhurley said...

You and Mark are such amazing parents to such an amazing little boy. Hang in there. . .this will by Kyle's year. I wish there was something I could do to help. . .


Robin said...

Hugs and more hugs! I so wish things were different. Can't wait to see the pictures.

Love ya,

Shari said...

I agree that you and Mark are amazing parents. I know it may not seem like that to you, but you ARE and you are an encouragement and inspiration to us who love you. I pray that they can figure this out soon. Poor Babe! Take care! We are here pulling for you!

Heidi said...

Just checking in on your little guy. Im so sorry youre having to make these decisions. Poor baby, he's one amazing boy. Continued prayers for Kyle and your family-
Heidi & Jack 6, Mito.

Mel said...

We are here for you! Whatever you need...we can help! We love you guys and think you are pretty amazing!
XOXO Mel & Fam

Weerock said...



Lauren said...


You and Mark are the most amazing parents. I know you would go to the moon and beyond for Kyle. I'm so glad to know you have doctors that have similar drive!

You are always in our thoughts.. always.


Anonymous said...

Sending lots of hugs your way. Wish I could do more.