Tuesday, February 9, 2010


I met again with Tomas' surgeon today in order to review everything that is going to happen. I asked if it was possible to save the gall bladder. He said when it is symptomatic like this and has been problematic since birth it is better to remove the gallbladder because it is at a great risk for either continuing to be trouble or even to become infected and lead to liver damage.

I asked how he would be fed post surgery. The doctor said to try the g-tube straight away, once he is cleared to eat, so we can test it out while he is still in the hospital. In theory it should work since the surgeon is re-doing the Nissen, and removing the gallbladder. The reflux and gallstone pain are the two reasons we are not using the G now.

I asked if fixing the morgagni (liver) hernia would allow his left lung to inflate. He said it should with time. That, and fixing the reflux, should allow him to eventually come off the oxygen .

I asked if he would go to PICU post-op and got the answer "Oh yeah - and if they don't have a bed we'll cancel." And I found myself relaxing my shoulders and actually saying "oh, good."

Oh good?? It is so weird to be grateful that he will be in ICU, but I know the level of care is unmatched anywhere else in the hospital. I hate the thought of him being so high risk that he is defaulted to PICU. And why are we having this surgery anyway?

He is perfectly happy and healthy on the J feeds. He is gaining weight slowly, but steadily. Does it really matter if we can't put food in his belly?
I want to grab my baby and run far, far away.
I want to leave him attached to his feeding tube 21 hours a day.
I want 3 surgical scars across his abdomen to be enough.
I want to see smiles and hear giggles, not screams of pain while we wait for meds to take effect.
I want bright, alert eyes to meet mine. not the groggy sedated ones that come with the pain meds.

So why are we having this surgery?
For cake. A birthday one. For Tomas. For next year. That he can eat.
So when he grabs at our food we can give it to him and not try to distract him with some toy he doesn't want.
So at Thanksgiving dinner he can eat turkey.
So he can join his family at the dinner table for the rest of his life.


  1. Last night my older daughter found you through a comment left on Kristen's blog.I spent over an hour pouring over your sweet boys birth and subsequent medical battles.And battle he has.Two things really spoke to me during my reading,well,many things did but two that I want to tell you about... one, was when you talked of "Be Still".I did a post way back about that exact thing.A women's retreat exercise we did... Be still and know that I am God.Be still and know that I am.Be still and know.Be still.Be."that has carried me many a times over the last 3 years.

    Then you mentioned how Tomas will and has shown you the way.I have said that a thousand times about Zoey and it is one of the things I ALWAYS repeat to new parents,especially parents of children with Down syndrome,going through medical crisis'.THESE CHILDREN CAME TO SHOW US THE WAY.

    Today I came here to say an official hello and tell you I will pray for you and your fighter boy as he once again rises to the occasion and shows you the way.Your family is beautiful.

  2. I love Heather,glad she found you.
    Tomsas always has a place in my prayers. I too have grown quite fond of you two!!
    Here's to cake!!!!

  3. OK, even if I can't spell your son's name.
    Sorry, TOMAS!