Three Little Birds

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

My Sleeping Beauty

All went as well as expected for Lydia’s 19th trip to the OR on Wednesday. It was an 11 hour procedure as it took awhile to get through all the scar tissue in her chest and place the two ends of the esophagus on the external traction buttons. She will be sleeping and paralyzed in a medical come for the next 2-4 weeks as Dr. Jennings comes daily and applies a few more straws into her buttons to gently and slowly grow her esophagus. So far, she has been very stable from a cardiac and respiratory standpoint. Today they had to do some adjustments to her vent settings as her CO2 levels were starting to get on the high side and they have been keeping adjusting medications to keep her Bicarb and potassium levels in the normal. The nurses feel she has remained very comfortable since her surgery and I feel she is in good hands in the CICU. Her gap was around 64mm and now down to the mid 50’s so I’m guessing it will be closer to 4 weeks before we have enough growth for connection. The next few weeks will be critical in seeing if we can actually get this girl an esophagus and get her back to KC.

Lydia’s friend Avery from North Carolina is also a Sleeping Beauty at the moment as her connected esophagus had developed a bigger leak and she had to undergo another big surgery this week to correct the leak and will also remain sedated and paralyzed for a couple weeks. Lydia’s friend Camden has joined her in Boston and after doing some tests on his trachea, he will be joining the ranks of snoozing and growing healthy esophagus tissue. Please keep all these tough kiddos and our families in your prayers as it’s so hard to be have your family separated for weeks and months on end to pursue every chance to give them a chance at good health. Our dreams are small but the same – a child that can eat popcorn at the movie theater or someday even go have pizza with their friends without having a liquid diet given to them in a feeding tube or the worry of horrible choking spells. Thanks for the unending support for our little Warrior Princess.

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1 Comment

  1. Debbie Harrington

    Amanda and family,
    Praying that Lydia has a speedy recovery and she can soon be home with her bubby and sissy. Don’t know how you have done it but, keep up your spectacular job. Lydia is so lucky and fortunate to have you and Clay as her mommy and daddy!

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