Saturday, January 12, 2013

learning on the lurch


Em and Soph love the Chronicles of Narnia, and I like to think of the author C.S. Lewis as a bit of a kindred spirit.  I have loved reading the books and watching the movies with them - sweet memories.

Recently, I came across this quote from C.S. Lewis:

If we let ourselves, we shall always be waiting for some distraction or other end before we really get down to our work.  The only people who achieve much are those who want knowledge so badly that they seek it while the conditions are still unfavourable.  Favourable conditions never come.

But, oh, how I wished for favourable conditions last night.

Between the hours of 2 A.M. and 7 A.M., Ralph, Janneke, and I wrestled with a faulty g-tube, had a quick visit of both the ER in St.Catharines and the ER at McMaster Children's Hospital in Hamilton, and settled on the use of a Foley catheter until 9 A.M. when our local med supplies shop opened.

It was a kick-in-the-pants kind of reminder to keep extra g-tubes in the home, as well as a catheter or two.

There are two critical issues with a situation like this: (1) the hole in Janneke's belly will start to close or tighten if there is nothing inserted and (2) Janneke is prone to seizures when her blood sugar levels drop.  When she is not being fed, there is a greater chance her blood sugar levels will drop.  I can't feed her if she doesn't have a g-tube. I suppose you can see the trouble?

Not exactly favourable conditions.

Thankfully, staff at both hospitals were helpful in giving me catheters and other items to use until we could meet with our supplier at 9 A.M.

*I found it discouraging that both hospitals did not have g-tubes in stock.  I told Bernice those of us with tube-fed kids ought to form some kind of support network for these middle-of-the-night crises.  Of course, it's always the middle-of-the-night time frame.  If I had to pick, I'd favour a crisis in the daytime - or not at all.*

This morning, by 10 A.M., I inserted the new g-tube, had some coffee, and Janneke fell into a well-deserved sleep.


And I now have my back-up plan in place should this happen again. Mind you, to use Sophia's words, "Murphy's Law, Mom... if we are prepared, it won't happen."


It isn't my favourite task to carry the responsibility of g-tube insertion and care.  When we take our kids into the hospital, I realize that we are all too familiar with the medical lingo.  That usually means we are taken seriously when we go to the ER.  I have experienced many times the role of showing staff how to manage my kids' care.

I don't begrudge the staff; they have to know and practice so much knowledge as it is.  When I am recognized as an expert with my kids, I take that responsibility seriously and appreciate the team approach.  But, it isn't my favourite.

I am thankful for the rush of adrenaline that comes with these circumstances, allowing me to think and operate, but I hate the stress and fear that worm their way into my heart and mind.

All the same, I guess that means I've learned something with these unfavourable conditions.

Now it's the night again.  Here's hoping for peace and quiet - and working g-tubes.  And here's to good humour and a refreshing walk at noon today with a great husband who reminds me of the fight for Joy.

Peace to your home and to your heart when you are learning on the lurch,
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1 comment:

Marya said...

Hey Sara. Thanks again for sharing. You are such wonderful advocates for your daughters. Wishing you strength for the long nights and busy days!