Tuesday, February 12, 2013


It is Tuesday, and Sarah did not get a trache.

The day before yesterday Sarah spiked a fever in the morning.  It was treated with Tylenol and went away and has not come back.  No one was particularly concerned.  The team sent both blood and respiratory cultures to make sure there was not an infection.

Sarah has a bacterial pneumonia.  So we cancelled and we are trying to reschedule.  Currently, we are hoping that the OR scheduler can fit us in on Friday.  (I am thinking that the job of a scheduler in a hospital must be the least rewarding and most difficult job in the hospital.  You take calls all day demanding that you invent time that is not there.  It is always and emergency.  It is always important.  I hope she can do this!  Maybe I should be praying for this under-appreciated nameless person.)

Why does a delay of a few days feel like such a long time?

We have been in the hospital for four weeks today.  After the surgery, it will be between five and seven days of "critical airway" which means heavy sedation and definitely ICU.  After that, healing takes as long as healing takes.

The good news it that we heard from our insurance.  They will cover home nursing up to a certain cap which should buy us enough time to get secondary coverage.  The hospital case manager is working to expedite approval.  That same coverage will also cover any medical equipment needs beyond what our insurance will cover.  You would be surprised at home much these things cost!

"Trust in the Lord with all your heart,
on your own intelligence do not rely;
In all your ways be mindful of him,
and he will make straight your paths."  Proverbs 3:5-6

We are trusting that God knows what He is doing.   Trusting God, not my own intelligence, is hard.

I want to know.  The more difficult a thing is, the more I want to know.  I cope with stress by asking questions.  None of that is bad, unless is becomes an impediment to trusting in the Father.

Why did Sarah get sick again?   I want to know!  It is not fair!  Delay after delay after delay, we had finally found a path that would get us home- and it is not as though it was a short or easy path!  And now this.  I cannot argue.  I cannot fix it.  I cannot understand.  All I can do is wait.

Lent begins tomorrow.  The devil always works harder in Lent.  I guess I don't know that.  But it has been my experience.  Temptations always seem harder during Lent.  I never remember that it is Friday until I have a hamburger in my hand- at which point I try to convince myself that I still have not remembered.  See how clever he is?  Forgetting is not a sin, but remembering and doing it anyway... but it is so much harder to put the burger down than to never pick it up!

Obviously, we all have our temptations.  I won't share all of mine.  Just one.  My desire to understand, and my confidence that I can, sometimes means I try to squish God into comprehension.  I want things to fit.  I want tidy little packages of truth that fit neatly together into a beautiful mosaic of a world.  Maybe it is that way, but if so, God is the artist, not me.  I do not get to collect the pieces and arrange them as I like.

I said it before: I think we need the rug pulled out from under us every once in a while, so we can land on our knees.  Maybe if I can trust God a little more, I can get a glimpse of His artwork.

So, we are going to be in the hospital for a few days longer than we expected.  Six weeks (four past plus two ahead) puts us in the ballpark of forty days.  I am not going to stop asking questions.  I am not going to stop trying to understand every change to my daughter's health.  But I can try to put more trust in God.  Not just that He will take care of my family in some long-viewed obscure way, but that He knows what He is doing every step of the way and I don't have to.

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