May 26, 2009

Two Weeks....But Who's Counting?

Having a child with intense medical issues requires one to look at their own life and expectations in wholly different way. I have learned a bit about the practice of mindfulness and since it does not come naturally to me I have to continually remind myself to remain in the present. It is easy when you have a child with a tracheostomy to get lost in looking forward to the day when you no longer have to be concerned about nursing, medical supplies, speech and eating problems, let alone "trach-snot". I frequently hear my friends on the forum talk about the challenge of not living for decannulation and missing life along the way to that eventual destination. It helps so much to know I am not alone in this challenge to stay focused on the here and now while maintaining hope that some day our day will come.

We use the term "guarded hope" to describe the state of mind in which you try to have hope for a brighter future for your child while not setting yourself up for disappointment. So many moms I know expected the trach to be a short term solution only to find the years going by with little change. With each appointment scheduled we carefully hope to hear good news.

We personally are 2 1/2 years into this journey and it is hard sometimes to see so many other kids from the trach forum get their trach out while we try to wait patiently. But there are also many who are waiting just like us and that helps. There are some who have lost their trached child (it can be dangerous to have an artificial airway) and would take the trach forever if they could have their child back and it helps to remember that we are lucky to hold our babies with their trachs. Some know their child will always have their trach (perhaps there is some peace that comes with knowing that) and it helps to know if they can do it we can too if we are given the news that the trach will be permanent. Then there are those whose child got the trach out only to need it put in again at a later date. We all fear that. Most of us try not to even imagine it but sadly it happens somewhat frequently. There are so many possible outcomes. A seasoned trach mom knows to guard her hope and keep it close. The pain of disappointment stings.

So it is with guarded hope that I am awaiting our appointment with Ainsley's otolaryngologist on June 9th, but who's counting?! At her last appointment he was considering some surgical options but wanted to give it just 3 more month to see. It will have been 3 months by the appointment and I am looking forward to hearing what he wants to do. I'm used to hearing lets wait and see so that's what I'm expecting while my heart is secretly hoping for so much more.


  1. Susan, I hope along with you that this next appointment is THE one where you get the news that NOW is the time and that the waiting game is over. As for finding peace in the knowledge that Jack will never lose his trach ... not really.

    Thinking of you always.


  2. I can so relate to where you are at right now. Last year we spent literally month to month thinking "the next procedure" would be the one to get the trach out. It was agonizing ! Around us family would get excited , talking about how "everything would be 'normal' now" but after about the third time I just didn't want to hear it anymore. (Not to mention that - no, it would NOT be 'normal' for quite awhile and having a child WITHOUT a trach is not 'normal' to us)

    So , here we are nearly 3 1/2 years into it, with the possibility of it maybe coming out this summer , but I am not counting on it anymore. If it does YEAH , I am thrill but if it doesn't well, at least we are well versed in what we are doing and have a wonderful support system in place.

  3. Very ironic - I was just thinking about this today. They're moving Mackenzie's next bronch up to assess if her trach needs to be upsized and I find myself daydreaming of her coming back from the OR with a naked neck. Probably not realistic, but one can dream right?

    I hope the otolaryngologist will have a definitive plan and you don't have to play the waiting game anymore. Sometimes I think doctors forget how painful waiting can be.