Saturday, February 9, 2013

On Tuesday Sarah will get a tracheostomy.

This is good news.  It is really good news.  For Sarah, a trache means fewer trips to the hospital.  She has had enough.  It means that she will not need to be intubated for future surgeries, at least until the trache is removed.  It means she has a secure airway.  As soon as we are comfortable with the care (!!!!) life will be less dramatic and scary.  We will be able to see sooner if she needs help breathing, and we will usually be able help without a trip to the ER.  This is very good news.  

But it will not be easy.  As far as leaving the hospital, we believe that this might be the fastest and is certainly the safest route home.  After the surgery, she will be considered a "critical airway" for the first five days.  No one can touch the trache except ENT, who placed it.  

How fast we get home after that depends on how fast she heals and how fast we can learn.  

There is a lot to learn.  We have started the process of applying for supplemental insurance, because we will probably have to have overnight nursing.  (So, yeah.  An extra person in my house.  Do you think I can convince them to help with laundry?)  

And there is equipment.  I do not yet know what that will entail.  One considerable new thing will be a (more than one?) monitor.  Sarah will not be able to vocalize anymore, at least at first, so the monitors are important.  Without them, unless you are looking at her, you may not know something is wrong.  When she is well, there is a valve that we can get for her trache which will enable vocalizing- but even then she is not supposed to wear it at night.  Monitors matter.  

Lots to learn.  At least two more weeks in the hospital.  

The doctor came in the night before last and admired my strong baby.  "She is one tough girl.  She is a keeper!"
"No! You cannot keep her!  You get her well and send her home!!"
She laughed.  (Great doctor!)  "Well, I get her for at least another week!"  

That is the business end.  But the question we are getting most often is, "How are you holding up?"

That is harder.  The bumps have been bumpier.  Or something.  

We spent weeks watching slow improvements that were followed by much more dramatic setbacks.  Sarah had an event which, although it turned out well, was truly awful as it happened in the days following.  Lily has had a harder time this time.  We prepared her for a surgery followed by a short stay in the hospital.  It has not been short.  Pregnancy hormones make me more emotional.  It is difficult for the family to spend so much time apart. 
"Beloved, do not be surprised that a trial by fire is occurring among you, as if something strange were happening to you.  But rejoice to the extent that you share in the sufferings of Christ, so that when his glory is revealed you may also rejoice exultantly."  1 Peter 4:12
There it is.  Right there in scripture.  Life is going to be hard.  For everyone.  That is why there is so much good music about how God helps us through difficulty.  Trouble is a universal experience.  This story, our story, is unique.  But the theme is not.  The theme is common.  I have been reaching for Lily's favorite band, the Casting Crowns recently.
"I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you""

He is here.

Thank God for the Ronald McDonald house which makes it possible to be closer together when someone is at the hospital all the time.  Thank God for Josh's weirdo work hours, which give him four days off each week.  Thank God for our family and friends and prayer networks.  Thank God for the grace He gives us every day to face that day.  Thank God for a plan for progress.

So how are we holding up?  It depends when you ask.  We are grateful for your prayers. 


  1. Still praying for you.

    See if they'll give you an inline catheter for the trach, they are really easy to suction!

    1. Thank you Katie! I will ask. Easy is good. Is it as effective? The inline that she has for her tube now is great 3 times out of four. The fourth time the nurses still have to disconnect the vent to suction.

  2. I remember learning a lot of amazing equipment for John that I certainly couldn't operate today. You can do it, dear Beth.

    Aunt Jane

    1. Thank you Aunt Jane! I look forward to the day when I can look back and have forgotten how. In the next few weeks I will learn what equipment I hope to forget about.