Three Little Birds

Story of 3 little birds and one who soared above us all.

Score another one for Team Lydia.

Surgery #6 is in the record books, and despite a few, shall we say, interesting discoveries, as well as a brief period off the ventilator, Lydia performed solidly.  She’s ending the day as she started it, with all the vent settings, blood gasses, and vital levels essentially the same.  She even looks as though nothing really happened.

The first section of the 6-hour procedure was to perform a bronchioscopy, sending a camera down her trachea to see how her breathing performance is going.  What they discovered was a 1cm pouch in her trachea where a previous surgery was performed to disconnect the tracheal/esophageal fistula.  This pouch has been filling with mucus and fluid, which eventually drains down into her lungs, likely accounting for a great deal of her breathing challenges.

This was also when they discovered some additional reasons it has been so hard to intubate her: her trachea is slightly soft, it has a funny angle to it, and her tongue has very little muscle tone, due to never having need to use it, which makes it difficult to clear her airway.

It was at this point that they had trouble intubating her again, leaving her off the vent for about 45-60 seconds.  She came roaring back once they got her ventilated again, due in part to her strong (albeit unique!) heart.

The traction sutures on her lower esophagus had torn through at some point in the past week.  This means that the esophagus has not grown as much as they had previously thought.  Dr. Jennings reattached the sutures and began traction again.  Although we “lost” some of the length we thought we had gained, the esophagus looks healthy, strong, and has thick walls.

Finally, Dr. Jennings removed the “spit fistula” at her neck, and created a new one 2cm lower, which will work to stretch the upper section.  He spoke confidently that her reattachment procedure would be soon, perhaps as early as 1-2 weeks.

He will, however have to repair that bloody pouch in her trachea, which will be another invasive procedure.  However, he will be able to tackle that project in concert with another procedure, making an additional surgery unnecessary.

So we’ve gained some ground, we’ve lost some ground, and we’ve learned a great deal.  I’ve been reminded that my daughter is a miracle of nature, with a unique anatomy that shouldn’t work, but somehow does.  She’s a force of nature, that seemingly cannot be dissuaded from carrying on, from growing, from defying all the odds.

So we’re grateful.  We’re grateful to be living in an era where science and medicine make it possible to fight the fight she’s steadily winning.  We’re grateful to Dr. Jennings, Dr. Foker, her excellent nursing care from Zoe, Noel, and the rest.  We’re grateful to Cigna, who has unquestioningly covered every one of our requests.  We’re grateful for a family and friends and neighbors so willing to give of their time, their care, their airline miles, and funds to travel.

Forward, Lydia.  Baby steps will get you home.

Lydia post surgery #6, Friday, May 14, 2010

The mechanism that stretches Lydia’s lower esophagus each day: a custom designed button with sutures connected to the end of the esophagus that loop through each of the 4 holes in the button.  Each day, a new catheter end or two is inserted into the loops to increase the tension and stimulate new growth.  It’s elegant and brilliant in its simplicity.

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3 Comments

  1. Karen

    Keep fighting miss Lydia. May God bless you and keep you strong in the days to come!!!

  2. Aunt Kelly

    I love that Foker. And that Lydia. And those parents. And that gritty determination displayed by all. Love you guys so much! xoxo ~K.

  3. Paula Bull

    Good luck and God bless you all.
    Bob and Paula Bull

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