13 Years of Trach and Joy

Thirteen years ago I sat in the PICU by my baby. 

He was intubated, having failed (spectacularly) his extubation following his g-tube/nissen surgery and was on the schedule for a trach the next day. 

November 8, 2010 was the first time I saw my baby's face without any tubes or wires (except for the few minutes when he was supposed to have them but had pulled them off). 

I was scared, terrified might be a better word. I mean, it was his airway, his very breath of life. 

And it was the gateway to a whole new world. A world where he laughed for the first time. He grew, he played, he thrived. 

Today, I'm sitting in the same hospital but on the floor. He's sick. We think he's doing better. I mean, he did make it to his home vent Saturday evening and to the floor on Sunday. But in spite of workup after workup, antibiotics that should kill anything!, and still on higher doses of his heart and rescue meds, he is struggling once again.  

The night before trach surgery

He's still running fevers daily. This afternoon he has needed more oxygen, more heart meds, and he's tired. There's talk of returning to the PICU. Yes, again. 

Thirteen years ago, I sat as someone told me they thought I might be going too far. Taking care of a child with a trach and a vent would be too hard, too hard on me, on my marriage, on our children. Did I really want to go down this path? Did I understand what I was taking on? Did I realize that in adding interventions, it would be that much harder to take them away. 

Playing after trach surgery

Yes, I wanted to do it. (I mean, the only alternative was letting him go.) No, I had no clue (and knew I didn't) what I was taking on, but I hadn't shied away from hard things in the past. And sorta, in the back of my mind, intellectually, I knew that once we added an intervention it would be harder to take it away. But I also knew that I was sending a message, especially to my other children: Mom will find a way to handle it. There isn't anything that you will do or go through or whatever that will make Mom give up on you. 

We've learned so much over the past 13 years, but mostly, we've learned love. 

So while I don't know where this is going, I have faith that it will work out, one way or another. Strength is needed and will be given. 

Thirteen years. For a kiddo who outlived his life expectancy 4881 days ago, that's pretty awesome. 

And he's taught us to find joy in the journey. 

“The joy is in the journey, the struggle is part of the joy 

and the final destination is not an end but another beginning of another journey.”

― Kathy Boyd Fellure