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The old, "If you can't say anything nice- don't say anything at all," has me post(tongue)tied.

Not that anything dramatic or traumatic or pneumatic is going on.

I've just got the middle-of-the-road blues.  The pick up my feet and do the daily dance but my rhythm's off blahs.

Soooo, I interrupt my regularly scheduled blog.  Instead, in honor of my friend Jenny and her, um, "love" of high school french, I present this poem by Karla Kuskin...

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Just when I though life was getting dull...

Did you know that if your 9 year old son is jumping on a friend's trampoline and a bug or beetle happens along, it can get unknowingly bounced too?  At a very high rate of speed.

Did you know that if said bug hits said 9 year old in the eye bad things can happen?
Again, at high speed...

Yes, my son had bug parts embedded in his eye.  They came out.  However...

However, the bug PIGMENT is still embedded and can only come out with surgery or more slowly; allowing the cells to slough off on their own.  Kind of a no-brainer choice really.

My son is now the proud owner of a bug-pigment splattered eye.  Eye tatoo's, done naturally.

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Sitting in my van in front of the house where my 14 yo has choir practice, attempting to write poetry... 

Blooming dogwoods, and a flock of gorgeous heirloom chickens strutting about the green lawn in front of my windshield laughed at me.

My poem kicked and wriggled and clucked.
So I wrote a riddle instead. 

Our sons protocol letters have a section on post emergency management that says: Child unable to take/maintain PO intake: Start or continue 10%glucose continuous infusion at 1.5x maintenance. 

What I've learned is that the doctors expect me to be the judge of PO intake.  Though they give advice about when to decrease the I.V. they now actually ask us to assess our son's condition and make the final choice on turning off the I.V. and even when we feel confident enough about his blood sugars to take him home.

Sometimes I want to scream, "I Don't Have A Medical Degree, Why Are You Asking Me?" 

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Although hospital time is wonky, you have to keep track of it in order to keep up with your child's care.  We asked to stay in the E.R. observation room for 2 1/2 days because that was the only way I could have both the boys in the same room.  The observation rooms don't have windows.  Talk about a quick way to mess up your body clock.

After 2 1/2 days in a room with a 3 and 4 year old, no sleep, no windows and a diet of chocolate and caffeine I had a hard time remembering when anything had happened.  I had not been writing things down because of the sheer circus of having two boys with metabolic crises at the same time.

Later in the week I found myself having to depend on others when answering doctors questions about the time-line of the boys' illness. This is not a good place to be.  It's also frustrating because now I don't have a record of how the boys blood sugars ran over the week- information that might have been useful for comparison in future illnesses.

Which leads me to an axiom: In the hospital your child's care is your responsibility- not the staffs. We go to a great children's hospital.  They have literally saved our children's lives multiple times.  Yet every time we are there it is impressed upon me anew that it is a parent's job to advocate for their child, watch over their child, and to coordinate care.

When your child has a rare disorder this home grown advocacy is especially true.  Exhausting, but true.



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• My 3 year old addressed me yesterday morning thus: "Mother, will you bake me a lovely pizza?"  Then his eyes sparkled.  How can I not try to bake a lovely pizza?

• My almost 5 year old was discussing Scoobie Doo with his 11 year old sister.  She told him that Scrappie Doo was a puppy in the later cartoon series.  He corrected her, "No, he wasn't a puppy.  Scrappie Doo had a gland disorder."

• This morning I mentioned to the almost 5 year old that his coughing and sneezing was from allergies.  In his never ending campaign for a dog he assured me, "But I'm not allergic to dogs, I'm only allergic to animals that have a lot of cookies in them, but not dogs."

          Cookies?
          He explained, "Well, I can't have cookies because I'm allergic."

          Why wasn't that immediately clear to me?

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Time?  Once you walk through the sliding glass doors into the E.R. you have exited whatever time zone you formerly occupied and have entered Hospital Time, cue music.

If any hospital employee, from the care partners up through the Director of Pediatrics makes any sort of estimate that involves time- ignore the estimate.  It, no matter what It may be, will happen when It happens; this is the definition of Hospital Time.  Once you learn this, hospital life is a lot easier to handle.

E.R. staff have their own groove and time expectations.  A kid comes in vomiting with diarrhea- give them an anti-emetic, watch them and discharge them as quickly as you can.  No biggee. When it comes to FODs? Throw out all time expectations and hopes of a quick discharge.  Plug up your ears when an enthusiastic Resident* unfamiliar with FODs tells you, "Oh, diarrhea is no big deal, once your child stops vomiting and eats a few Popsicle they'll be fine."

This is when having a specialist you trust is such a blessing.  This is when you lean on your protocol letter.  This is when you depend on what you have studied about your child's disorder.  This is when you depend on your own knowledge of your own child. This is when you realize that the only meaning "time" has at this point is that you want more of it.

Both of our FOD affected boys were admitted to the hospital last week with a gastrointestinal virus.  One son bounced back on D-10 plus potassium and was able to start eating and be weaned off the I.V. within 36 hours.  Our other son, with the very same virus, was on D-10 for a full 6 days and required yet another 36 hours to stabilize off the I.V.

The time difference was a matter of life and death.


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*I highly recommend finding a good E.R. and a good hospital and sticking with it.  We have spent every one of our 9 hospitalizations for FODs in the same E.R. and been admitted to the same children's hospital.  At first we continually saw new Residents unfamiliar with FODs, but now it seems that the whole E.R. knows what to expect. 

This is vitally important because it means.

1. We are now whisked through triage.
2. We don't have to wait till our sons are already in full blown crisis to "prove" that they need treatment.
3. Our sons are given the time that they need to heal.

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I'm washing dishing and looking out the back window.  My husband is playing with our three youngest sons.  They are in a big plastic climbing cube that he is slowly rolling.  Raucous good times.

The last Sunday night I stood here washing dishes was also a good night.  Little did I know that my boys would wake in the night with the stomach virus from hell.  Litttle did I know what drama was about to unfold.

I took one boy to the hospital around midnight that Sunday and then called home the next morning only to have to hang up because my 16 year old needed to call 911 while my husband tried to administer glucose gel to my lethargic 3 year old.

I waited, helpless and unknowing, in an observation room (in another city) with my sick 5 year old for the intercom announcement of the ambulance arriving with my sick 3 year old.

I'll never forget the feeling of being crumpled to my knees one moment and then raised the next.

I'll never forget that first hug with my 3 year old. He was still strapped in his carseat, strapped to a gurney and attached to an I.V. pole rolling down the E.R. hallway.

It was a rolling, overwhelming, dextrose enhanced, adrenaline rushed thanksgiving sort of hug.

So this Sunday night, I wash dishes and glance outside and feel blessed.  I feel blessed and yet know that I will be annoyed with my boys about something-or-other several times before bed.  They will misbehave one moment and shine the next. 

I'm too weak to be consistently thankful or consistently joyful.  No memory is that powerful, but I can thank God for moments of clarity.  Moments when I see clearly.  Moments on the hospital floor praying and feeling God's presence. 

Moments that remind me of the power of the Cross and God's overwhelming sacrificial love.


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