Tuesday, February 5, 2013

The Devil You Know and Pre-preparing for decannulation

One day at the library we happened to chance upon this book.

It is a charming tale, with wonderful illustrations, about a family with a little devil.  At first the family is overwhelmed at the disruptions the naughty little devil creates in their lives and can think of nothing worst than life with him.  Then one day there is a knock at the door.  A tiny and smartly dressed devil is there with the offer of getting rid of their little devil and in turn she will move in and kept house for them.  The family resists at first, but then their little devil does something to send them over the edge.  Their little naughty devil is banished and the new one moves in taking over the entire house and causing absolute pandemonium.  The book is written after and holds true to the old idiom, "Better the devil you know than the devil you don't."

When Maaike first got her trach, at 1 month old, it was the devil.  It changed everything about our lives, where we lived, what we could do, where we could go, our dreams and adventures were turned on their heads, and for awhile I wasn't sure how we would ever recover.  But, with time and familiarity her trach became "the devil we knew."  It still very much changes our lives, but I'm not afraid of it anymore and in deed I am thankful that a little devilish piece of plastic preserved her life and allowed Maaike to bring us the immeasurable joy she has.

I have dreamed about the day when Maaike would be decannulated and we could throw her traches in the trash.  I have longed for the days when we don't have to divide our family activities, but we can all go together, cold and flu season or not.  It seems too good to be true that those days may be coming upon us.  And to be honest, I am terrified.  Could we be trading the devil we know for something much worse?

I fear sudden swellings and flareups with no sure airway.  I fear surgery and recoveries without easy access.  I fear it is too early.  I fear emergency phone calls and CPR.  I fear the worst.  I fear my fears.  I fear the unknown.

on the way home from her last appointment with a baggy full of fashion coordinating trach caps

Maaike calls her trach caps "bottle caps".   She is adorable.  And, she is doing well with them.  The process is pretty quick.  Start with 2 minutes the first day, then 4 the next, and continue to double each day.  In the span of a couple of weeks you come to having the trach capped for eight hours a day.  We are almost there. The next step is a capped sleep study at the hospital.  This will be very telling to whether she is really ready or not.  If the answer is "Yes" then they basically pull out the trach and stick a band aid over it.  In 15 minutes it will start to heal itself.  Unlike an earring hole, a trach hole or stoma, doesn't patch itself into permanency, it is an open wound held open only by the trach and once the trach is removed it will start to heal itself. Amazing really.

So here we are, familiar and resolved in a trached life that looks to be turned up on its head again.  I suppose we will adapt as we did before and always have.  I suppose I most fear a false sense of hope, but whether I am ready or not I have a marvelously spunky two year old who has grown and overcome against so many odds and if she is ready then I will be along for the ride.


  1. Good luck! I hope everything goes well. I am reminded of a dream I had when we were both in Lindon. I dreamed that Maaike was in preschool without a trach. Hopefully you are on that path! I think of your family often and am grateful for the updates.

  2. Wow, what an exciting and scary time. What you are saying makes so much sense. Can't wait to see how this all goes and watch Maaike become more independent.

  3. Maaike is adorable! It sounds like a scary time, but one with much opportunity.