Friday, January 31, 2014


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.