21 December 2010

Out of order

Monday 3:13 pm
My phone rings-
Hmmm this number looks familiar.  Why...  "Hello, This is Jonathan."

"Hello, is this Jonathan." 
  -A  voice, strange, asks me.

"Yeh.  How can I help you?" 
-I have figured out why the number was familiar as I listen close.

The voice continues filled with urgency. "Hello, this is your child's pediatrician.  I tried to get a hold of Angela but she didn't answer the phone. Can you get ahold of her, and can you have her call me."
-They were going to nap when I left after lunch.
"Yeh, um sure.  She's probably taking a nap with the boys."
 -The calm urgency continues "Ok, maybe a different ring will wake her, she needs to call me back right away.  There are some results that came back from Enoch's blood work that show he has a metabolic abnormality."

What is that supposed to mean?
"Ok, I will have her call you right away."



My mind begins racing with everything I have ever read and remembered and things I didn't know I had remembered, and probably lots of things I have never read or learned.... Angela I need to call Angela.  I call her 5 times in 4 minutes and begin walking to a pickup to drive home to talk to her when she answers
"Hey, sorry I didn't pick up. Dana is here with a meal (an incredible thing families in our church do for "fresh" mothers)."
I tell her what I have just heard.
Ten minutes later she calls back.  "Can you come home?" Serious sadness is in her tone. "The Doctor says he has Maple Syrup Urine Disease."
"Yep." Not the time for being conversational.
I talk to my brother David, tell him I must go, not knowing when I will return.  He jokes that it is a good thing I don't do anything on the farm anyway.  I chuckle and agree but then he disagrees with himself and I go.

I drive home...my mind rolling; Maple Syrup Urine Disease, the only disease I could remember from the sheet telling of the rare diseases for which Enoch had been tested.  Why was that the only disease I could have told you was on that paper...?
I walk into the house Dana and her kids are playing with Abraham; he loves them dearly.  I continue on to the bed room to overhear the end of a conversation my precious wife is having with Lisa, a nurse with the Genetics department at the lead Children's Hospital in the state. It is hours from our house.
Lisa- "You need to get here as quickly as possible, don't drive recklessly but you need to get here as quickly as possible.  How soon can you leave?"
Angela-"Within 15 minutes."
"Good. Now, when you get here you need to go immediately to the Emergency Room.  Park at the parking right at the door and walk in. 
If they don't see you immediately, here is a pager number.  If they won't see you immediately you call this pager and someone will be there to make sure you are seen immediately.  You are an ER nurse correct?"
"I was until I had our first child."
"You understand what I have told you then. Right?"
Lisa proceeds to give her directions and tells her she will email them also immediately along with other info for us before we leave.  However, at this point my brain stops taking in dual information as I have also been skimming a MedlinePlus page Angela had up on our laptop lying on our bed.  Shockwaves begin jumping out at me from the page:

Persons with this condition cannot break down the branched-chain amino acids leucine, isoleucine, and valine. This leads to a buildup of these in the blood.
MSUD can cause damage to the brain.  Even in the mildest form...can cause mental retardation.
Unwelcome images start bombarding my brain but I read on...
avoiding food
feeding difficulties
A knot is starting in the pit of my stomach, the Enemy is loving the fear building in me.  I begin replaying conversations Angela and I have had in the last 48 hours of how Enoch is so sleepy and non-active compared to Abraham and how we are (admittedly probably in unbelief) waiting for the "shoe to fall" although we had prayed that he would be easier to care for than our first colicky babe.  And other conversations involving Angela asking if I thought everything was OK, because Enoch didn't seem to be sucking nearly as vigorously as he had the first couple of days. And how just earlier that day I had finally got a good look at his eyes and one seemed in my head to be slightly crossing and it dawned on me that I don't know if I had prayed at all about his eyesight.  Now these things were whorling.
I skim on as they talk on: vomiting, seizures, urine that smells like maple syrup, Ketosis.
protein-free diet
health care provider following amino acid levels closely
long term treatment requires special diet : man-made formula, must remain on this diet permanently

Even with dietary treatment stressful situations and illness can still cause high levels of amino acids.  Death may occur during these episodes.  With strict dietary treatment, children have grown into healthy adulthood.
CHILDREN HAVE GROWN INTO ADULTHOOD.  My head takes this to mean the exception to the norm.
neurological damage

I am in a fog for a moment.  I am through skimming the article in only a moments time and Angela is still on the phone.  However, by this point I no longer am registering what is being said other than another admonition to leave immediately.

The next 15 minutes are a fog or me showering and us leaving.  But through the fog we have joined into the battle.  The war has been going but a new fray has picked up to a feverish pitch.  The battle for our son, and the battling of unbelief in our own hearts and minds.
God is kind and good.  His providential care is amazing.
About the only thing I concretely remember from the shower is our current family memory verse. Sweet Providence.
Isaiah 64:4
-"From of old no one has heard or perceived by the ear, no eye has seen a God besides you, who acts for those who wait for him."
So the waiting on God began.  The praying.  The reading of God's promises.  The sweet music of the Gospel . 
We mostly stayed off the phone.  Dana was alerting the prayer warriors at church.  One other phone call that would facilitate others and then a call to the dear friend who prayed with us and helped us think through how the Enemy would be using this to prey upon us.  And to think through where he might be attacking us and helped us know how to prayer.  This lead to us thinking though and reading though great helpful thirst quenching/ soul strengthening scripture.

We eventually arrived at the hospital and were immediately attended to.  They were surprised to see how healthy he looked and how active he was as they worked long at drawing enough blood for all the different tests they needed to run. 

Then after much crying our waiting began.
The hours ran long.
Late evening around 2200 the first news came in, and it was refreshing.  The test on blood ammonia came back normal. 

Then we were given a place upstairs to spend the evening and were told it would not be until the next morning that they would be able to run the tests for the two major tell tale tests.  So, we waited. Many doctor visits. One that reminded us of our dear friend Sharon in Australia.  And an absolutely wonderful RN that attended Enoch throughout the night.
The night was long and so was the praying.  Angela especially had very little sleep as she held our precious little boy almost all night.
In the morning the visits recommenced.  Doctor after doctor, all with slightly different takes on what was going on, but all looked hopeful.  Then the Geneticist came.  Questioning our history, our background all of our families background.  Then his pager went off.  1030.  An hour before the results were supposed to be in.  He walked to the other room and I could tell nothing from an overheard conversation.  But the news was like rain in the dry season.  All of the tests came back showing no problems!!!!!!
Tears of thankfulness flowed.  An offering to a God who gives good gifts, and answers prayer.
Until we see Christ face to face (and maybe then it won't matter) we will probably never know if God was gracious and gave us a completely healthy boy in answer to our prayer, or if he healed our little boy in answer to our prayer.  Either way he has dealt kindly with us, and has "...[acted] for those who wait for him."


  1. Sarah M10:20 pm

    So thankful for a positive outcome!

  2. Anonymous12:56 am

    What a beautiful post. Yes, God has been so good to you! Thank you for letting me share in prayer and child care for Abraham. Thank you for being part of our family! We will see you here at 10:00 tomorrow for our Shupe Christmas party. How much we have to be thankful for!!!!!!

  3. Anonymous9:38 pm

    Praise God for His grace and goodness to all of us, especially to your family. I am thankful you have a healthy baby boy!! I know He would have given you the grace, peace, joy, and strength if the outcome of the tests had shown different results, but I rejoice with you that Enoch is healthy!Brenda Maust

  4. Oh my word! You had me in tears, but now tears of joy that Enoch is healthy. Praise the Lord!

  5. Darryl and I read this together... oh, how we give thanks with you, rejoice with you, bow low with you.

    So utterly grateful to God.
    So grateful for you. And sweet Enoch.

    Your words here had me right there... and your words keep me right there: at His throne saying glory, glory, glory....

    All our love,

  6. Beautiful! What an amazing story of God's faithfulness and goodness to you! (and I had a hard time with Jonas being admitted for jaundice...I can't imagine what you both were feeling with Enoch!) Praise God! Thanks for sharing! We love you all!!!

  7. Elizabeth H.1:11 pm

    Oh, my goodness how scary. So glad he is okay! Matt mentioned last week that you'd had to take him to the hospital, but that is all he told me. I had no idea it was something so major. Praise God!


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