Sunday, January 17, 2010

Dr's meeting, family, and staying grounded

We had our meeting on Friday afternoon with Kyle's main dr. It was hard. We have to make choices for Kyle that will influence him for the rest of his life...that could influence our family, our other children...I sometimes get tired of making these choices for him...we left the appt and I had that feeling of driving..it was a beautiful day here and I wanted to keep driving. I took the long way home, doesn't that sound crazy. I so wanted a break from reality, I would...never, ever walk away from this...from him...never, but sometimes my brain hurts so bad that I ache for a break from it. But when you have children...you never really get a break, the kids are never far from my head, or mainly my heart.

We are going to Columbus Children's..it seems like the best fit for him. We should know by Friday when we are going, we are under a pretty intense time crunch, we are living with a PICC line and we know that it's short lived, the dr's here are nervous to put in a central line since every time we do he gets a bad infection. His dr feels strongly that the surgical material in his esophagus needs to come out, that it's adding to his issues. The problem with that is that it's a very intense surgery, complicated, scary.

So now we wait and we hope we can keep Kyle healthy and out of the hospital....

There are times where doing this is lonely, it's easy for us to retreat into ourselves. After the meeting on Friday, I felt incredible lonely. I didn't want to talk about it or think about it. I ended up going out with some girlfriends that night for the first time in months, it was wonderful...I laughed, and felt loved. It was exactly what I needed.
Then on Saturday night we had dinner with Mark's entire family, it was again exactly what we needed....we left dinner feeling loved and surrounded by support and comfort.
Family and friends keep us grounded...they keep us feeling sane and loved...as hard as this is going to be the amazing thing is to know we aren't alone, and that in itself is a wonderful thing.

XO
Kate

17 comments:

Mel said...

XOXOXOXOXXOXOXOX!
Mel

Missy said...

Kate, I feel your pain and I know your pain all too well. What I'd give for a break from reality! But, it's just not possible...

I hope that Columbus will lead you to answers and a treatment that makes it all better.

Missy

McTriplet Mommy said...

XOXO - love you all so much. I am here for whatever I can do to help. I'm glad you got out and enjoyed yourself a little this weekend!!

Love you,
kara

McTriplet Mommy said...
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McTriplet Mommy said...
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McTriplet Mommy said...

Oh my - sorry my comment went through 3 times!

Lauren said...

Sending you guys all my love,
Lauren

The Phamily Matriarch said...

Kara, isn't 3 your number? LOL

Kate, my sweet friend, you and your family are totally loved and cherished. Y'all are never far from our hearts.

I'm so glad we all got to giggle so much last night...best kind of fun! We can't wait to do more of it...and in person.

The Haynes Phamily Loves y'all!

Jessica said...

Kate,

So sorry things are so hard...it is never easy to make decisions now that you know will stay with our children forever.

You and your family are in our thoughts and our prayers. Hoping for relief for Kyle and peace for you all.

Love and Hugs,
Jessica

Yaya said...

(((Hugs)))

Anonymous said...

Kate,
I am glad you got a small break this weekend. I hope that Columbus brings answers and relief for Kyle, I am sure it will be so hard to leave your other kids. You will be in my thoughts, as always.
Also, I am so excited that Kyle got to go back to school! Is it possible that a nurse goes with him to kindergarten? Tucker had a child-specific aide this year that we trained, I don't know if that is something you can even look into.
Leigh

Heather said...

Loved and prayed for .. always.

Anonymous said...

Kate, we will be praying.
our love to all of you, Merydeth's Mom

littlewonders said...

Hugs.

Shawna said...

Good luck St.Clair Family! I hope you guys have a safe and successful trip!! I will keep you in my thoughts and prayers!

Amy said...

So glad you were able to laugh and feel supported and comforted this weekend--you deserve that!

I continue to keep Kyle and your family in my thoughts and prayers every single day.

Amber said...

My heart hurts through your words because I know that feeling as well. Sometimes I just want to keep driving too, but we can't. Sometimes I think back on 10 years ago...on carefree times. Oh, how we took advantage of that time of no worry.

Praying that your trip to Columbus gives good answers. Praying for Kyle...and for you.