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 :)


Alicia said...

Oh Jen, I am so sorry she is not recovering well. I am praying she can have the surgeries she needs sooner rather than later.

I hear you about the trach itself not being the burden, it's all the ways our kids are held back by it. In Faith's case, it is her voice.

I am always praying for you all. I'm looking forward to seeing you next weekend for some much deserved girl time!

Ayden said...

Awe Jen... it's hard!! Ayden isn't 100% either. He is still on O2. He dropped down to his previous "norm" before we got off the O2. We just can't get him off. If we push him then he alarms all night long. No secondary infection.. just so slow! :)

Anonymous said...

I miss you.

A few things:
1. I'm glad that Faith is home.
2. Those little tights get me every time.
3. Sitting in a hotel lobby in miami, about to go to Ecuador. Totally freaking out until I read the Dr. Suess quote. I know that the context is quite a bit different, and so wasn't going to equate my feelings about leaving the country and faith's situation. But, you're like one of my best friends so I feel at liberty to do so.

4. I'll see you when I come back, probably with some cute Andes outift--something that Faith might never find the appropriate occasion to wear, but i'll buy it anyway :)


Anonymous said...

Jen and Brian,

We will continue to pray that God will give you the grace, strength, wisdom and hope in this time that you are going through with Faith. The Lord has provided a way up until now, He will continue to make a way where they seems to be no end. He works in ways we cannot see, He will make a way. We love you!

Katie, John and LJ

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