"For my thoughts are not your thoughts, nor are your ways my ways."

Almost two weeks ago, Miss Sarah had her surgeries.  They went well.  Her palate is repaired.  She has a thumb and a pinkie finger, currently under wraps.  There are tiny little tubes in her ears to help drain fluid.  We should be home.

"For my thoughts are not your thoughts,
nor are your ways my ways." Isaiah 55:8

*Sigh*

After the surgery, the anesthesia team was not comfortable removing her breathing tube.  At the time, I did not really understand why.  Sarah is a complicated kid.  It was a mouth surgery.  I figured they were just being cautious.  So we would spend a night in the Pediatric Intensive Care Unit.  We have lots of friends in the PICU.  An extra night in the hospital was not a big deal.  Surgery was on a Tuesday, we had planned on a three day hospital stay, but knowing her and knowing how cautious everyone is with her (justly so) when I was told three days, I heard "through the weekend."

Tuesday night: "Tomorrow we will think about extubating."  She was not ready Wednesday.
Wednesday night, "Tomorrow we will think about extubating."  She was not ready Thursday.
Thursday night, "Tomorrow we will think about extubating."  She was not ready Friday.
So it went until Monday.  Sarah had Pneumonia.

But, on Monday the 20th she was ready!  They did an extubation readiness test (ERT)  for a few hours.  Essentially, they turn off the vent, but leave the tube in so Sarah has to breathe but if she gets into any trouble they can fix it in a hurry.  She passed with flying colors.  She was fantastic!  They gave her a break for a few hours, so she would not be tired when they extubated.  Then they pulled the tube!

She cried and cried.  I held her and tried to calm her down.  She could not catch her breath.  She could not stop crying.  Was it pain leading to extreme agitation leading to inability to breathe effectively?  Were there too many secretions leading to inability to breathe effectively leading to extreme agitation?  What was the chicken and what was the egg?  In the end, it did not matter very much.  It became clear that she needed help.  She was re-intubated.

We were all pretty discouraged.  It does happen, but we were so optimistic!  Monday was the day I had expected to go home.  (Can't trust that day.)  This was a setback.

That evening, I chatted for awhile with a wonderful family I met in the PICU waiting room.  They are a wonderful, optimistic, faithful, strong family.  I have enjoyed getting to know them.  One of them was talking about how to love our babies in this setting.  We cannot pick them up when they are intubated.

"I just want to hold her and hug her."

I fell apart.  Contrary to what you might think, since I keep a very public blog, I am not prone to public expressions of emotion.  I just broke.  In a moment I was crying on the shoulder of a near stranger.  I wanted so badly to hold my sweet Sarah.

Josh posted scripture on Facebook that night.

"Amen, I say to you, whoever says to this mountain, ‘Be lifted up and thrown into the sea,’ and does not doubt in his heart but believes that what he says will happen, it shall be done for him." Mark 11:23

She will be well.  God is in control.  It has only been a week.  We finally admitted that it was not going to be an in and out hospital stay, and we checked into the Ronald McDonald house.

By Tuesday night, we were talking about extubation again.  Sarah had been started on a medicine to reduce secretions.  Her vent settings were low again.  They had a better plan in place for pain management.  Wednesday we would extubate.

Wednesday morning the ERT went beautifully.  She was amazing.  Lily and I were at the Ronald McDonald House, awaiting news that the extubation was successful.  Josh was with Sarah.  We had our PICU dream team in place.  This was going to happen.  I got a text message from Josh.

"Pray."  I did, with Lily.  Then a few minutes later, "Pray hard."  I did, silently.

After an eternity, Josh called.  Sarah had failed extubation.  Unlike the last time, this time in minutes.  This time she did not breathe at all.  This time the high flow O2 through a nasal canula did nothing for her.  They gave her a mask, but still no air was getting in.  Her heart rate plummeted.  They started CPR.  My amazing husband was in the room watching helplessly.  The sequence of events is a little jumbled in the retelling, but Sarah required twelve minutes of CPR.  They re-intubated as quickly as they could.

Small blessings: we had plans to visit with a dear friend.  She arrived just moments after I spoke with Josh.  So, I pulled myself together and got in her car and went to the hospital.  Josh did not have to leave.  I did not have to wait for mom.  Lily would have a ride home to the grandparents' house after a very brief visit.

By the time we arrived, Sarah was stabilized and sedated.  Lily would see her sister sleeping peacefully.

By the time we arrived, every specialist in the hospital had come through.  Josh tried to keep up with it all.  A social worker came in.  "How are you doing?  Can I get you anything?"  By the time we arrived, Josh and Sarah had been through Hell.

The biggest concern on the table was new.  Sarah coded.  This event had all kinds of frightening potential outcomes, but at the top of the list: brain damage.  She was hooked up to an EEG machine, to monitor for seizures.  Her eyes were pried open every hour to make her pupils dilated in response to light.

This was not a minor setback.  No food.  In fact, nothing in her belly.  We cannot know it is working and we cannot risk it not working.  Sedation is up.  Vent settings are up.  But most important, neurology.

For forty-eight hours, everything was going to monitored.  Even when everything looks good, the doctors are hesitant to say so because in the first forty-eight hours after an event like that, everything can change.

"I command you: be strong and steadfast! Do not fear nor be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9

Are you kidding me, God?!  This is my baby!  I was looking for encouragement in scripture and I found that verse.  I was afraid.  Very afraid.

I had met a father at the Ronald McDonald house that morning.  He was really upset, and he just wanted to talk.  So I listened.  He was worried about his very ill daughter and struggling with his wife.  He was fighting insurance.  He was questioning.  He was trying to talk himself out of losing faith.  After listening for about half an hour I said all I had to offer.

"You just have to trust that God loves your little girl more than you do.  He is in control and He is holding her in His arms."

Now I had to own my words.  It is so easy to say things like that.  Our all-knowing, all-powerful Father is in control.  I'm not.  I never was, but neither had I ever felt quite so powerless.  God loves Sarah.  I will trust in His love.

Today the forty-eight hours are up.  She did not have any seizures.  She has had normal neurological behavior.  All the labs are positive.  She is back to her baseline.  They may still want an MRI of her brain to look for damage, but we are overwhelmingly happy with what we have seen.  It is within the bounds of what we understood was possible, but outside the bounds of what we had been allowed to expect.

We still have big hurdles.  Sarah is still intubated.  It is midnight, and I am up waiting for evening rounds.  I expect to hear a pretty coherent plan for extubation- possibly on Monday.

"The Lord’s acts of mercy are not exhausted, his compassion is not spent; They are renewed each morning-great is your faithfulness!  The Lord is my portion, I tell myself,  therefore I will hope in him."  Lamentations 3:22-24