Three Little Birds

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

rough night, week, summer, year…

Yesterday I spoke to Lydia’s nurse and she said the Boston docs were going to talk to the KC docs about getting her transferred in another week or so. I was for a brief while cautiously optimistic that she would be back in the same city. What a difference a day makes. She has been having some problems since getting her trach last week and last Friday I got a 2:30AM call to say she was desatturating and getting placed on Nitric oxide gas to help her breathe better. She seemed to be doing better over the weekend and Sunday they placed her on the drug sildenafil (trade name Viagra and no, not for the same reason as Bob Dole). Sildenafil treats pulmonary hypertension by relaxing the blood vessels in the lungs to allow blood to flow easily and the nitric is a lighter gas which helps carry the oxygen to her lungs. Yesterday she was doing even better and they stopped the paralytic to allow her to wake up some. Last night she became very upset and her sats went to the 30’s and took longer than usual to recover. She was placed back on the oscillator vent (another pleasant 3AM call) for awhile last night but it did not seem to help and she is now back on the conventional ventilator with very high settings. She is also now on norepinephrine, dopamine and epinephrine drips in her IV to help with her blood pressure and got some more blood last night. Her nurse stated at the moment, she is in a better place than earlier this morning and holding her sats in the 70’s (her norm, our norm is 97-100%) Clay and I will be flying out to Boston tomorrow at 6AM to be with her during this critical time. They are unsure what has caused this latest crisis and are treating her with every class of antibiotic in case she were septic but her blood cultures have not grown anything yet and she remains afebrile. Please pray that her little tough body can continue to fight this complication and get back to a better state of health and that Clay, I and her team of doctors can make the best decisions for her with her complex needs. Wyatt and Ava will be getting in more time with the grandparents in Trenton so if anyone is in the area and needing some toddler time, I’m sure the grandparents won’t mind sharing for a bit. Love, The Johnstons



  1. Venissa

    Amanda and Clay, You are all always in our thoughts and prayers. She is one tough little burger!! I am sending tons of messages to The Big Man!! With Love, Venissa Burchett

    • Jayla

      No kidding what a difference a day can make. When I saw you Monday the plan was for Lydia to be coming home soon and I just read the blog today & I’m so sorry Lydia has become so sick. Your family is in our prayers every night and we will shoot some extra prayers during the day for Lydia. Love you guys. Please let me know if I can help you out in any way! Love, Jayla

  2. Kathy Veatch

    I just ask you at this time to touch Lydia with your healing hand and your perfect will for her. I ask that you would grant Clay and Amanda peace in the midst of this storm, wisdom beyond their years and intelect and rest for their souls. Thank you for your perfect grace, love and mercy that goes beyond anything we may comprehend. I ask all these things in the name of Jesus who cleanses all from sin. Amen.

    • Shelley

      Well said Kathy. Praying the same prayer too! Love you guys!

  3. Bobbi

    Dear Jesus . . . Continue to wrap your loving, healing arms around this precious family. We don’t always understand Your will (someday we will) . . . but help us to be ever mindful that You are always in control. All of us . . . friends, family, Lydia’s medical team . . . cry out to You to bring Lydia through yet another crisis and heal her fragile little body. Make her strong and well and whole. . . and bring her home to her family who loves her so very much. Give us all peace and help us to ” Be still and know that You are God” . . . We humble ourselves before You and ask for divine healing for this baby girl. . . . In Christ’s name I pray . . . .

  4. Eve (Evans) Nissen

    Amanda & Clay,
    I send warm thoughts your way quite often and I’ll do whatever I can in any way to help.

    Take care and have safe travels.
    Eve (Evans) Nissen

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