Spending any length of time at the hospital is draining. Here’s the thing, though—most of the time, it’s not especially emotional. Moments come, of course, where you feel a swirling dizziness as your life changes before your very eyes. But, most of the time, we tap our fingers and thumb through books we aren’t reading and joke with our nurses and wait.
And it’s the waiting that drains.
It’s the waiting that pulls out the obsessive in me-- and I madly scour old college textbooks and online medical journals and Google for information that might predict the future like a crystal ball.
For six weeks, I had August 14 circled on our family calendar. (Full disclosure: I’ve had the calendar turned to August since July 25.) For six weeks, I waited to see what the doctor would say when he looked down her airway, and I hoped that her airway might be clear so he could take out her trach.
Of everything, the trach is the thing that has drastically changed our lives. Suffice it to say— the words sacrifice and patience have new depth for Lee and me. The biggest problem with her airway seems to have resolved, but we weren’t sure if there was anything else that might make it hard for her to breathe without the trach.
Once we knew decannulation was a real possibility, we waited expectantly, anxiously, cautiously. (Full disclosure: I waited anxiously; Lee waited cautiously. He is made of sterner stuff than I.)
So, we went in Thursday morning and waited to hand our baby to the doctors who would put her under anesthesia and look in her trachea. We waited again, and finally heard that the subglottic region of her trachea looked great and they could put in a smaller trach with the hope of capping it and seeing how well she could breathe around it. I thought, “Hooray! The biggest hurdle to her decannulation is cleared. She should pass the rest of her time here easily and come home without the trach!”
So, we waited for the doctor to come in and cap the trach. She didn’t tolerate that very well because even the smallest trach takes up a large percentage of her airway. So, the doctor decided he would come the next day and try to take out the trach altogether and see what she could do.
Lee spent the night in an extraordinarily uncomfortable chair, and Friday morning the doctor came in again. He tried pulling out the trach, but K simply is not ready to breathe without it yet.
So, we came home Friday with the trach still in place and instructions to wait until she gets bigger. (And until RSV/ flu season is over—As Lee put it, decannulation is not a winter sport.) So, we will try again in March.
The Passy-Muir Valve
In the meantime, we got a pretty great consolation prize: a Passy-Muir valve! This is a speaking valve that helps her not only make noise but also practice breathing around the trach. Because it is a one-way valve, it is sometimes used as a half-way step between depending on the trach and breathing independently.
And so-- for the first time since she was 12 days old, we heard her.
With the help of her Passy-Muir valve, K cried and cooed while Lee and I looked at the other in happy shock. Because we spent six months learning her breathing patterns and silent facial expressions, her little voice sounded strange and miraculous all at once.
I often misunderstand when God says wait. Usually, it feels more like no. And though wise, well-meaning people tell me that God’s timing is perfect, sometimes it is hard to believe them.
When I am just sitting on time, it is hard to see how the wait is good. I am impatient.
Now, however, I have a tangible reminder each time she makes noise that waiting is not always a waste of time. It is in the waiting that I grip tightly onto prayer and learn that my God is sovereign.
And my view of prayer is shaped by my view of God—as I wait, His throne comes clearer into focus because I have no choice but to trust.
I know that prayer is no talisman; its answer no barometer of my “goodness.” I cannot barter with the God of the Universe to ensure my version of a happy ending. As I deal in turn with disappointment and delight, I can rest in the truth that whatever comes will be for the greatest good.
I have seen God as sovereign King, but He does not sit powerful and aloof. He is Father. The kind that looks and listens. And even though I sometimes feel mad or ungrateful, I know He will take me as I am and change me. So as I wait, I talk to Him.
I enter the throne room with nothing to give.
My King—He says, “Come anyway.”
He uses the words He spoke long ago to the prophet Jeremiah: “I know the plans I have for you. Call to me. Come and pray to me, and I will listen to you.”
And though I am no prophet, I know that those words are for me. Glory becomes Grace as I come before the One who needs nothing—and in the waiting I am refined.