Walking on ecmo

Описание: UPDATE
1-1-18

I’m still not sure what motivates Zei. She doesn’t seem to care about breaking boundaries unless they are her own. She isn’t interested in who she has impressed. And she let me choose her playlist for walking, unaffected by the song choices unless I pick one that “hurts her ears.” So I’m not sure what motivates Zei but can tell you Zei motivates me.

On the first day of 2018, Zei took her first steps outside of her PICU room. Over 100 steps. While on ecmo life support. Ecmo life support and the life line of the most amazing staff here at Children’s Mercy. First day of 2018 and a first here at Children’s Mercy Hospital. The staff have offered Zei a judgement free zone, in-tune with her individual needs, no matter how different those are from theirs or the kid in the room next door, or the one they cared for last year. No doubt this is how they roll. And oh how they rocked it today!!! Zei’s ongoing motivation and a posse of professionals seemingly more like family transformed into guardian angels. Zei pressed one foot after another into the cold, hard ground, heel toe heel toe...heal. It’s been cold and hard. She keeps pressing in.

She is healing. In every way. A girl who had a breath-taking fear of getting her blood drawn is now literally getting her breath from a hose inserted into her jugular.

Heel toe heel toe. Heal.

She rarely breaks focus to smile, but I caught a glimpse today. And I’m not convinced she is happy. But she is not in a place of despair. We hope. We let our imaginations take us home, free of cannulas and cords, free to decide our day, to hug Ziah and Jai, to lay on the couch or ride a bike. To determine each day’s plan, but never again to believe we have much control over anything.

Heel toe heel toe. Heal.

So we welcome 2018 with open hearts and open minds. Boundary breaking, heart-aching. Tacos and Tears. Grateful for this year. Much love. Namaste.

#tacosandtears