Update

I will do the best I can.  My laptop is acting up.  It is inserting the letter "I" all over the place.  It seems like there could be a moral there.  In the interest of sanity, I am aiming for brevity.  Moralizing annoyance can happen another day.

Just hours after my last post, Sarah fell.  She hit her head.  For about half an hour everything seemed fine, but then she threw up.  We called for an ambulance to take her to the hospital.  The ER at Lansdowne did a CT.  At the time she was acting normally.  She was blowing kisses and arguing with everyone.  We all expected a beautiful CT and then home within a few hours.  I knew something was wrong when the previously confident and cheerful ER doctor came in looking confused and apologetic.

The CT showed a bleed.  The X-ray showed a possible spine injury.  The doctor was worried.  Worried enough to send for a helicopter to take Sarah to Children's.  Worried enough to tell me to get my husband to the hospital in a hurry.  Josh left the other two with a neighbor.  I called my Dad to meet the neighbor at my house and stay with the girls overnight.  Josh met me at the hospital and followed the helicopter to Children's.
The emergency department at Children's did a CT of her spine.  It also showed a potential spine injury, so she was put in a collar to stabilize her neck and an MRI was ordered.  They could say definitively that what they were looking at was not normal.  But they could not tell if it was normal for Sarah or if there was trauma. An MRI would show soft tissue and could answer the question.

The bleed was the top concern.  Our neurosurgery team had a look at the images and made their recommendation.  Sarah would be admitted to the PICU and she would stay for observation for a day or two.  Though the bleed was significant, there seemed to be room.  Her brain was not obviously under an pressure, so our best gauge was neurological status, and that seemed good.  She was alert.  She responded appropriately to all the nasty things that happen in these situations.  (Needles, needles and more needles: temper, tears and tantrums.)

Josh went home to be with Rebecca and Lily at 1 a.m..  I stayed with Sarah. That first night was an awful battery of tests and imaging.  So, when she was tired the next day, I was not concerned.  Night 2 she looked great!  She woke up happy.  She was signing, "Out!  Out!  Dad!"  It was incredibly cute.

But by mid-morning today, she was looking more tired.  Still, I though that it was not outside the realm of normal for her to be so tired and I did not worry.

Then we had to get her read for her MRI.  We changed her trach, her trach ties, her stabilization collar and her diaper.  She did not get mad.  In fact, she barely responded at all.  Lethargy is a neurological symptom.  Then she started throwing up- another neurological symptom.

They sent her for another CT, and though she made it down to radiology without issue, she threw up during the test.  There was no was she was stable enough to get an MRI- which is much longer and requires that she be alone- monitored but alone.  They still think the MRI will show that her spine is fine, but they need the confirmation before they can take off the collar.

This CT looked slightly better than the first.  Significant bleeding, but no obvious pressure.  Neurology and neurosurgery both want to watch and wait but they both also said we should be looking elsewhere for causes.

Neurology erred on the side of caution, and ordered an EEG.  The PICU team also ordered a slew of other tests.

Sarah has been on her vent today (usually only needs it at night) and she has needed oxygen.  She has had a fever for most of the day yesterday and overnight.  Tylenol did not break the fever, but Motrin is not an option because of the bleed.  Her blood work had a pretty normal white blood count- which should be encouraging, but isn't.  It means that infection is probably not the cause, which means we are still wondering what is and praying her brain is OK.  There are tons of other tests with various results- but the bottom line is that something wrong and we do not have a definite cause yet.

Meanwhile, Rebecca is refusing to take a bottle and Lily has to be in school ever day.  She is wound up, worried and tired.

So much for brevity.

We are peaceful, so thank you for your prayers.  It is prayer that has carried us.  We are planning to be here for the weekend, so we are planning to stay at the Ronald McDonald house.  Josh will bring the girls out here sometime after Lily gets out of school tomorrow.

Just hours before our latest episode began I wrote this in my last blog post:

"Having a panic attack was quite a blow to my courage.  Having more than one took its toll on my confidence.  I cannot do this.  And that is the point.  

"My grace is sufficient for you, for power is made perfect in weakness."  2 Corinthians 12:9  

"But we hold this treasure in earthen vessels, that the surpassing power may be of God and not from us." 2 Corinthians 4:7 

Everyone has a breaking point.  If we rely on ourselves, it is only a matter of time before we find ours.  I do not want to trivialize fears.  But it is our choice whether to go to God or "succomb unrestrainedly."  I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down."

True, but not easy.

Tired, I am singing to myself and to Sarah:

 I heard the voice of Jesus say,
"Come unto me and rest;
lay down, thou weary one, lay down
thy head upon my breast."
I came to Jesus as I was,
so weary, worn, and sad;
I found in him a resting place, 
and he has made me glad.

I heard the voice of Jesus say,
"Behold, I freely give
the living water; thirsty one,
stoop down and drink, and live."
I came to Jesus, and I drank
of that life-giving stream;
my thirst was quenched, my soul revived,
and now I live in him.

I heard the voice of Jesus say,
"I am this dark world's light;
look unto me, thy morn shall rise,
and all thy day be bright."
I looked to Jesus, and I found 
in him my Star, my Sun;
and in that light of life I'll walk
till traveling days are done.