Tuesday, March 16, 2010

To the other places..

"Out there things can happen and frequently do
to people as brainy and footsy as you.
And when things start to happen, don't worry, Don't stew.
Just go right along.
You'll start happening too. "
-Dr. Suess (once again from Oh, the Places You'll Go!)

My nerves are shot. The pit in my stomach feels endless.

Tomorrow at 12:05 a yellow school bus with the Jefferson County Public Schools insignia predominately displayed across it’s middle will pull up to our curb. This 13 ton vessel of steel will transport my daughter (and all that goes with her) twelve miles (that’s an hour or bus time) to Fletcher Miller Special School where she will attend her first day of preschool.

And I will be at work. Where I should be. Because if I wasn’t and I had to watch that 13 tons of steel drive away with my daughter- the first time she will be in someone else’s care outside the home (and hospital, of course) the strongest prescription of Xanax wouldn’t suffice. So I will sit at work, watching the clock, counting down every minute until my baby girl begins her first day of school.

And she will enjoy every minute of it.

This might come as a shock with the post that preceded this one, especially when the next few months hold such huge implications for Faith’s future health. Yes, we are running the risk of exposing her to lots of germs- ok it’s not even a risk- there will be lot’s of germs. Yes, she is bound to catch a something. Yes, this could risk her not being able to have the necessary surgeries that could result another year with the trach. But really when it came down to it there was no choice.

Childhood is waiting, and it’s time for Faith to have her fair share.

:) J & CO.

Thursday, March 11, 2010

The Waiting Place

"You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A Place you could sprain both your elbow and chin!
Do you dare to stay out? Do you Do you dare go in?
How much can you lose? How much can you win?"
-Excerpt from Oh, the Places You'll Go by Dr. Seuss

I have been hesitant to post because I so desperately wanted to write that Faith is back to her healthy, vibrant three-year-old self but that's just not true. She's yet to make a full recovery from RSV and in fact has gotten worse then she was about a week ago. We managed to wean her off the vent at night only to have the docs tell us to out her back on (Ugh). She is most likely fighting a post-secondary infection (like pneumonia). During the day she is happy (when she is not coughing/gagging) but nights have been another story. The constant suctioning and fall out from the steroids (which they want her on for two more weeks!) have meant little sleep in our home.

On another disappointing note we had to reschedule Faith's tonsillectomy/bronch that was set for Monday. This was a step in the direction that would lead to reconstructive surgery, which might not even be a possibility due to her recent time on the ventilator. That's the million dollar question for which I have no answer for. When I was probing our ENT's (the person who will ultimately make that call) nurse she said that this recent bout of illness has definitely set Faith back. When I discussed this a day prior with her pediatrician I received the, "if Faith needs another year with the trach/vent then that's what she needs."

For me it's not about the trach. Heck, we'd much rather have Faith on oxygen with a trach than a nasal cannula. The part that's difficult for me is that it means one more year of silence. Living with a child who cannot make noise is pretty depressing some days. If she could make noise with her trach I'd say leave it in.

Ok now I am getting all dramatic. Nobody has said that the reconstruction is NOT going to happen but some have hinted that it's probably not going to. Ultimately we just need to trust that God is in control and His plans are bigger than ours.

Thanks for checking in!
Jen :)