Update

Sarah is in the hospital again.  I am very tired, so this is going to be more update than contemplation.

On Sunday, I put Sarah down for a nap at about 1 p.m..  I do not usually put the pulse ox on at nap time, because I am usually in the room with her and I can watch.  But, I had to get things done.  So I put the pulse ox on so I could walk away confident that if something went wrong, I would be alerted.  The pulse ox measures her pulse and her oxygen level.  Honestly, I have paid very little attention to the pulse.  I have a pretty good sense of what her normal numbers are, but if it is a little high or a little low, I would not notice until it set off an alarm.  The number I am used to watching is her oxygen.  When she has had trouble breathing, that number gives us an idea of how bad it is and whether we need to intervene.  

The pulse ox was alarming.  Her oxygen was a perfect 100%.  What could be wrong?  Oh.  Heart rate is 230.  Well, that is not a real number.  I did not think twice.  I had the number I needed, so I turned the machine off and just checked on her throughout her nap.  

Bed time.  The pulse ox is alarming.  Heart rate is 230?  Again?  I moved the sensor to the other foot.  230.  I checked a finger.  230.  I got a new sensor.  230.  There is no way this number is real!  Sarah has looked fine all day!  230 is not just high, it is absurdly high.  Out of the realm of possibility high.  Even as I watched her begin to show signs of respiratory distress, I still could not believe that number.  I called our friend who is a nurse.  I wanted to say, "Can you come check her pulse, so I can have a real number, so I can go to bed?"  I think I actually said something that sounded more concerned.  

She did come.  The number was real.  Away we go in an ambulance.  Do you know how many people come to your house if you call and tell them you have a two year old with a high heart rate?  Neither to I.  I lost count.  But the freshly cleaned carpet all the way up to my daughters room will attest to the grand number.  You cannot very well tell the paramedics to stop and wipe their feet.  

I begin to beat myself up.  

How could I have let my daughter sustain a heart rate that high for eight hours?

In the ER, they ask all the typical questions.  When did you first notice something was wrong?  (I didn't!)  How did you first notice something was wrong?  (I tried a battle of the wills with a machine, but the pulse ox won.)  Has this ever happened before?  (...)

What?  A heart rate so high I simply do not believe it is happening?  There were no symptoms?  I should have seen something, right?

EKG.  The EKG looks normal.  So the doctor thinks it is a regular but really fast heart rate.  That can be caused by dehydration.  IV fluids.  After a few hours, the heart rate comes down.  We go home, reasonably confident in out dehydration diagnosis.  How did she get dehydrated?  We are not really sure, but trached kids can lose fluid faster just by breathing fast or coughing.  Sarah had a slight cold.  So, a cold, and not a bad one, has sent us to the hospital, but not with respiratory distress.  

We were happy to have only spent hours in the hospital.  No admission.  We were home with a diagnosis and a relatively easy treatment plan.  We were going to have to treat the cold.  The hardest part was the order for breathing treatments every four hours.  It seemed excessive for a cold that was barely existent, but we were too happy to be home to argue.  Being proactive with a cold made sense, we have seen tiny little colds turn into pneumonias.  We added extra water to her diet to make sure she did not get dehydrated again.  

Easy enough.  She seemed well.  Everyone was happy. 

Until the day before yesterday.  Heart rate 230.  Wet diaper.  Tears.  Drool.  Beautiful color.  No respiratory distress.  Heart rate 230.  What is going on??  All of the sudden, I am worrying about Sarah's heart.  

But...but...but... That is not fair!  Her heart is fine!  Cardiology cleared her when she was under a year old!  

Back to the ER. Same questions.  Has this ever happened before?  (You mean other than two nights ago?)

Story time, while we wait for the EKG.  

About a year ago, we were in a hospital.  (Unnamed, but definitely not children's.)  The monitor reported a very high heart rate.  I remember the number, because I have told the story often.  It was silly.  It was absurdly high.  It was 230.  They looked at the number and they looked at Sarah and they did not believe it.  So they moved the leads.  230.  So they changed the leads.  230.  So the got a technician in and swapped out the monitor.  230.  They alarm simply would not stop alarming, so they turned the stupid thing off.  

Is this the same thing?  

EKG shows a possible SVT.  (More on that.)  The test is both treatment and diagnostic.  They give a drug.  If the heart rate comes down and stays down, it is SVT.  

SVT (Superventricular tachycardia) is a condition where the heart beats  really fast sometimes without apparent cause.  Basically, the wiring is screwy.  There is a short, the heart gets confused and is starts repeating.  Sometimes it goes too fast to be effective, which causes all kinds of obvious problems.  Sometimes is stresses or fatigues the heart.  Sometimes there is heart damage.  Sometime the heart gives out.  Worst case scenarios are terrifying.  The drug is like a reset button.  It slows the heart.  If it is SVT, the heart rate goes back to normal and stays normal.  If there is a different cause, the heart rate goes back up.  The drug works very quickly.  I watched it, and it was immediate.  Sarah, who had not seemed unhappy, perked up.  The monitor showed her heart rate drop from a terrifying 230 to a more normal 120.  Sarah was blowing kisses.  She did not tell me something was wrong, but boy did she express gratitude when it was fixed.  Should I have noticed?

Our hospital cannot admit trach dependent kids, so they send us away.  We are admitted at another hospital.   SVT.  We get a new set of specialists to follow with for the next few years!  At some point, there is is a procedure which can usually resolve the issue.  It is not safe for a two year old.  So,  for now, we medicate.  

The usual medication works in the opposite way that albuterol works.  Albuterol is Sarah's rescue medicine for breathing trouble.  We cannot mess with its effectivity.  So, after some back and forth, we decided to start a different medicine.  Three times a day, for the next few years, we have to give Sarah an oral medicine which will slow down her heart.  Properly dosed, we should not see any more scary heart rates.  Over dosed, and her heart rate will skyrocket.  Underdosed, it is ineffective.  We spend at least two days inpatient, to make sure she does not have any awful side effects.  

Reading the psalms:

"God is our refuge and our strength,
an ever-present help in distress.
Thus we do not fear, though earth be shaken
and mountains quake to the depths of the sea."  Psalm 46:2-3

 "The Lord is my shepherd." Psalm 23:1 

"Give thanks to the LORD, for he is good,
his mercy endures forever." 118:1

God is good.  

Miss Sarah looks amazing.  She is cheerful and playful.  She wants to go home and keeps asking for Daddy. But she really is doing well.  Praise God!  And we caught this, which many kids live with for many years, before it caused any damage.  His mercy endures forever.  

"Immediately Jesus stretched out his hand and caught him, and said to him, “O you of little faith, why did you doubt?"  Matthew 14:31

He stretches out His hand and catches me.  He chases away doubt and fear.  Our God is powerful.  Our God is awesome.  Our God is Love.  

I kept putting it off.  I did not want to do it.  Asking for help is uncomfortable enough, but asking for money?  

I am absolutely astounded by the generosity of family, friends, acquaintances and strangers.

Yesterday, we asked for help collecting money for an ipad for Sarah.  We were able to reach and exceed our goal.  Now we have to figure out what to do with the extra funds.  I had expected to meet the goal, but I expected it to take longer- much longer- and I did not expect exceed because I figured I could update as soon as the goal was met.  It happened so fast!

We are torn between donating excess to someone who has helped us- like the Ronald McDonald house where we always stay when Sarah is in the hospital, and donating to another child with like needs.  (I don't know one, I just think we could find one.)  We will not keep excess.  Money was donated to help a kid with a need, and we will make sure it goes to meet a need.

I am a little dumbstruck.  I am struggling to find the right thing to say.  Thank you doesn't seem like enough, but everything else seems to sidestep gratitude.

We did ask, and you answered.  Sarah will get her voice for Christmas.  Thank you!  We are so excited and so grateful!  Thank you.

Sarah needs a voice

I am going to update on this post, and at the beginning so it won't be missed by any new visitors to the page.  In just a few hours, we were able to raise enough money for Miss Sarah to get an ipad!  Thank you all for your incredible generosity.

Original post follows:

My daughter Sarah is two years old.  She was born with a genetic syndrome called Apert.  It is rare and symptoms vary.  Sarah's case is pretty severe.

Typically, kids with Apert syndrome have what is called craniosynostosis- which means that the plates in their skulls fuse prematurely which can put pressure on the brain as it grows.  Sarah needed surgery to relieve pressure at birth.  We spent three months in the NICU at birth with various complications.  Since then it has been a long, bumpy road for Miss Sarah, but things are finally beginning to stabilize.

Sarah is two years old.

About a year ago, Sarah was just beginning to make words.  She was on track,developmentally.  Just over a year, with a handful of vocal words and vocab growing.  She called Dada and Mama.  She said Lala for Lily.  She even said "G'ma" perfectly clearly for grandmom.

In January, she went in for a hand surgery and came out with a tracheostomy because she was unable to breathe after surgery.  The trache has been a good thing, overall.  She is a happier, healthier kid.  While last year we spent most of the fall in the hospital with several pneumonias, this year, we have been mostly home.  Sarah even started school this year!  But, the trache took away her voice.  Sarah cannot vocalize.

At the time, it was a heartbreaking setback.  She had just begun using her voice when it was taken away.

Since then we have seen wonderful progress. Most importantly, Sarah can breathe well.  Sarah can swallow, so she is learning to take more and more food orally.  Sarah can communicate.  We learned some sign language to teach her a few signs.  Given choices, she can pick.  Like every two year old, she is very good at saying, "no" but she can also say, "yes."  She is learning.

Also like every other two year old, she has temper tantrums when she cannot get what she wants.  But we often have to guess what she wants.  As she gets older, the dynamic is becoming more and more difficult.  No one like it when their child is crying.  When Sarah is crying, I cannot always tell whether she is hurting or bored.  Does she want a toy?  A new diaper?  Hungry?  Did she hurt herself?  Key in parenting a two year old is knowing when to say no, and that is becoming a problem for us.

Since I am guessing, I may not know that I have gotten the right answer until she stops crying.  I cannot just ignore the crying, because sometimes is something important.  She is a smart girl, and as she gets smarter, the disconnect between her understanding and her communication skills widens.  She is getting frustrated.   Sarah needs her voice.

Not long ago, the best course would have been to obtain a communication device which cost between eight and ten thousand dollars.  Those are really pretty cool devices.  They speak for a child.  She uses her hands to navigate pictures, telling the device what to say.  Now, an iPad does the same thing.  We want to get an iPad for Sarah.

It is not as simple as buying an iPad.  The app is expensive, you need a case and to make it easier to use, and there are specific screen covers for adapted use.  Still it is much less expensive than the older technology, and it is more portable.  The iPad would be a dedicated device.  As much fun as it would be to get an iPad for playing (or for me!) every therapist I have spoken with stresses that for this to be an effective communication device, it has to be dedicated.  If has to be Sarah's, and she cannot use it for games-no matter how fun or educational.  If she thinks it is a toy, she will not want to put in the effort to make the thing work for her.

We have tried to resist asking for money.  Everyone has bills and budgets are tight.  We cannot complain much.  We have excellent insurance, which has paid for almost everything.  In spite of that, our budget is blown.  Hospital incidentals, like food and parking, add up quickly.  We have a roof over our heads and food on the table.  We cannot complain, but we cannot buy an iPad either.

Please help us get a voice for Sarah!

(donate button deleted.--THANK YOU!!!)

The dueling isms of the season: Secularism & Consumerism

Thanksgiving is this week and we all know what that means!  Its Christmas!!

I love Christmas.  It is a beautiful holiday!  I love gingerbread houses and Christmas lights and Santa Clause.  I love mistletoe and feel good movies.  I love fireplaces and poetry and songs.  I love gift giving and gift wrapping and gift getting.  Movies talk about Christmas magic, and I can buy into that.  Christmas is fantastic fun.

The question comes up every year.  Can I celebrate Christmas with the world without stripping this holy day of meaning?  I don't think the fun is dulled if it is shared. I don't think the meaningful intent is stolen away by people who share these traditions without the meaningful intent.

I hear the noise.  "Keep Christ in Christmas!"  The rage against Santa and generic Holidays happens every year.  This year, we are supposed to be mad at the postal service who sent out an anti-Christmas flier.

I read an interesting, but familiar, blog post yesterday about secularization.  The writer claims that if you make a kid choose between a magic man who can fly and who gives you presents and a baby, the magic man wins.  So, she is kicking Santa out.  I get that.  I disagree, but I get it.

Most Christians can talk about St. Nicholas and how he evolved into the jolly man we invite into our homes.  Most Christians can talk comfortably about the various pagan roots of various Christmas traditions without flinching.  (But let someone wish them, "Happy holidays," and wow.  War on Christmas.  War on Christians.  Persecution!)  We love our various traditions.

(Fair warning: I am about to reveal my inner grinch.)

Every year at about this time I start to get irritated.  I get more and more irritated all through Advent and right up until Christmas.

"The people who walked in darkness
have seen a great light;
Upon those who lived in a land of gloom
a light has shone." Isaiah 9:1

Advent is not shopping season.  Advent is not mini-Christmas.  We are waiting for our Lord.  We are His people, in expectant, hopeful anticipation of the Messiah.  That is what this season is about.  In our color coded calendar, Catholics can see that Advent and Lent are purple.   Purple reminds us to prepare.

"In those days John the Baptist appeared, preaching in the desert of Judea saying, “Repent, for the kingdom of heaven is at hand!”" Matthew 3:1

We are the people waiting in hopeful darkness while a giant reindeer blinks his flashing red nose and a chorus of merry elves sing, dance and jingle all the way.

We are not waiting. We are celebrating. We have decided, as a culture, to skip Advent. It is like you spot a beautiful wrapped present with your name on it, but some mischievous brat yells out what is inside before you can touch it. Yes. Christmas will still happen, and yes it will still be meaningful, but someone stole Advent, and with it part of the fun. They stole the build up. They stole the wonder. They stole the mystery.

I am raising three little girls.  I am determined to give them the gift of wonder.  Mystery and hope will mark the season, and it won't be over-shadowed by a wimpy, saccharine, echo of joy.  We will celebrate Advent so we can celebrate Christmas.

"People, look east. The time is near
Of the crowning of the year.
Make your house fair as you are able,
Trim the hearth and set the table.
People, look east and sing today:
Love, the guest, is on the way."

I am not going to take Santa away from my kids to drive home some holy point.  I am not going to sneer at the cheerful "Happy Holidays" wishes.  I will delight in the good wishes of strangers, and I'll wish them good will.  I will enjoy watching Charlie Brown and Its a Wonderful Life and maybe even Rudolf.

Thursday is Thanksgiving.  Sunday, Advent.

"Oh come, Oh come Emmanuel, and ransom captive Israel."

The world needs God.  We are always hearing about how we need God more now than ever.  We are the people of God, waiting for our Messiah.  The King of Kings will come, and we wait.  Joyfully.  Expectantly.  Faithfully.  We wait in the darkness for the light.  Advent is not just a countdown.  It is a time to prepare and reflect.  As we get ready to celebrate His first coming, we recall that He will come again.  We prepare.  Get your homes ready!  Make it beautiful!  Bring in family and friends and fill the world with song!  But remember what we are celebrating.  This is not a cute baby story.  This is the story of light conquering darkness- and it is not over yet!  He will come again.

"A voice proclaims:
In the wilderness prepare the way of the Lord!
Make straight in the wasteland a highway for our God!"  Isaiah 40:3

Advent.

This year, I am determined not to be irritated by the evincive juxtaposition of Thanksgiving and Black Friday.  I won't do it.  I won't cry foul when Christians refuse to admit complicity in the secularization of Christmas or whine about nonsense "persecutions."

This year we will celebrate Advent, because when Advent holds its own as a season to prepare for Jesus, the dueling isms, consumerism and secularism, pale like glitter next to a diamond. The story about a magic elf with gifts might trump the cute baby, but the magic elf story cannot hold a candle to the true story. The advent story. For thousands of years, the Lord prepared His people and they waited.  He taught them, and led them, and protected them, and loved them. There were wars and there were miracles, all in preparation for one great King. They wandered. They were "the people who walked in darkness."  They knew He would come.  And He came.  He came for each and every one of us.  In His perfect plan, God chose humility. And the angels, the beautiful, awesome, terrifying angels adored Him.  

Santa?  He is welcome in my home, so long as he bows before the King.  And the King has not come yet.  If Santa trumps Jesus, you are telling the story wrong.

Be grateful. Then prepare. The King is coming!

Sarah made it home.

She is beautiful and well and cheerful.  You would have no idea that it was such a difficult week.  Of course, to put things in perspective, my darling daughter was blowing kisses to the paramedics on the way to the hospital in the ambulance just after the fall.

Tuesday night  I stood in the doorway, with the door wide open waiting for the ambulance, breastfeeding a six month old who was not hungry because I knew she would be later and I would be gone.  I walked away from a very upset five year old who stoically fought tears in the arms of a neighbor. It was one of those difficult nights.  In retrospect, you wonder how you did it, but in the moment, you simply don't have time to consider how, you just do what you have to do.

The days in between then and now are all a bit blurry.  I remember calling my husband from the local hospital to make sure he was coming.  She was acting completely normal, so to be perfectly honest, when I walked in I felt a little silly.  I thought I was over-reacting!  The doctor even thought it would be a CT to clear us and we would be home in hours.  I remember the fear when the doctor came back after reading the CT.  Fear was all over her face.  She did not want me to call my husband to drop off money (as we had planned) she wanted to make sure he was planning to come to Children's.  She did not say so, but I got the distinct impression that she thought we should be preparing to say goodbye.

I remember rather foolishly wishing I had not broken my Kindle.  How was I supposed to rally our prayer warriors?  We needed them!

I remember walking into Children's just as they were about to sedate my darling girl.  I shooed them away.  She might need sedation, but give me a chance to calm her down.  She had ridden in the helicopter!  She was restrained because of risks to her spine!  She was tired and throwing up and alone in an ER.  She needed Mommy.  Maybe medicine too, but mommy first.

When we finally made it to the PICU, I remember how she changed.  Sarah was so clearly relieved to be there, it was visible.  Interesting.  Friends (ICU friends- it was way past visiting hours, and we were still medically precarious) came by.  Hugs and warmth and pillows.  They were ready.  They even had my breast pump in the room.  It was, I think, the second time I had the experience of an enormous weight being lifted before I was aware of it.  I had not realized how scared I was until I was not scared anymore.  I hope none of you need an ICU.  I pray that if you do, you find the same level of kind and competent care.

Blurry days, with tests and more tests.  Unfamiliar residents came in and out to reassure me.  Familiar nurses, fellows, therapists and attendings actually did reassure me.  (I have no complaints against the residents.  I just did not  know them, and they did not know me.)  The MRI did not show trauma to her spine.  Her behavior was normal.  Neuro checks every hour (later every two hours) were normal.

Friday, I was sure we would be there until Monday.  Saturday Sarah was discharged.  Hallelujah!

Sarah is doing very well.  The bleed will take some time to reabsorb. Surgery is off the table for a few weeks- and we will do the best we can to keep from being discouraged by that.  Sarah expects not to be alone, as she is rarely alone in the hospital, and never at night.  So, our bedtime routine just got more difficult, again, as it always does after a hospitalization.  The refrigerator is empty.  (You don't buy stuff when you have no idea when you'll be home, and by the time you get home all the perishable stuff has generally perished.

But life is good.  Back to our noisy normalish chaos.  Miss Sarah may even start school next week! God is good.

Yesterday was hard.

I believe in the power of intercessory prayer.

Shortly after I posted, Sarah started getting better.  And not a little better-dramatically better.  She just seemed to wake up!  She was around midnight last night, she was cheerful and alert.  She was pulling on her lines and tubes.  She was signing for Dad.  She was twisting around in her bed.  She was even blowing kisses and waving.  It was precious.  I left to refill my water bottle and when I returned, Sarah was looking at me with sleepy eyes and she raised her hand way up high in the air to wave.  I got excited and then she got excited and the nurse came in and we were all excited together.

I stayed up until about three, chatting with the nurse and playing with a very awake and cheerful Sarah.

I missed neurosurgery rounds- they round really early- but apparently the neurosurgeon was ready to send her home today!  She will absolutely not go home today, or even tomorrow.  All the teams have to be ready, but this is still excellent news as it means that neurosurgery is not considering a surgical intervention for the hematoma anymore.

We are on our way to wellness, with obstacles shrinking.

Sarah is not getting food yet.  They would like to restart, but restarting is always a bit of a gamble after as much tummy trouble as she had yesterday.  I hope and expect that she will tolerate food well, but we cannot plan on it.  Since we cannot plan on it, it has to wait until after the MRI because we cannot have her throwing up and risking aspiration during the MRI.

Which brings me to the MRI.  She is still in a collar.  We still think her spine is OK, but cannot be sure and an MRI is the best way to know for sure.  It is not previously scheduled and it is not an emergency, so we are at the end of the line which means late today- they are saying between five and seven.  So I suspect eight or nine.  The MRI is sedated.

Which brings me to... her blood work.  Sarah is a hard stick.  And it gets harder every time someone misses or loses an IV.  So, after a few particularly difficult days, even drawing blood for labs is hard.  I have asked them to hold off on more blood until she is sedated, since she is going to be sedated.  I am also going to push for better access if they think we are going to be here for more than another day or two.  You would think a little blood work would not be a big deal, but the numbers suck.  She has needed blood work and follow up blood work two or three times ever day and ever time it takes at least two or three (and sometimes more) sticks.  So we are talking about ten sticks a day which is unacceptable.  Why so much blood work?  It is not because they are forgetting things.

One of the tests is for coagulation.  Since this is not a common issue with Sarah, the numbers mean very little to me and so I do not remember them.  She needed FFP (plasma) which is a blood product.  Two hours after it was given, then rechecked and were still unhappy with the result, so they gave more FFP.  Now they have to check again, but after three (three!!!) unsuccessful and painful arterial sticks, I sent the doctor away to figure out something else.

Miss Sarah looks miserable, but darling.  She is still in the trauma collar and she still has the EEG leads all over her head wrapped in a very fancy stocking cap.  (The EEG did not show seizure activity, which is unsurprising wonderful news.)  She is on a vent.  Two IVs are in- one in each foot.  The blood pressure cuff is on, since they are still checking regularly.  Regular leads for heart & respirator rates and a pulse ox.  Sarah looks like a very serious ICU patient, but the truth is, at the moment, she is doing quite well and most of these things should be coming off soon.

Oh!  Rebecca took her bottle last night, finally.  And the letter "i" is working again- so this post was not nearly as frustrating as the last to type.

Prayer works.  Thank you.

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.