Three Little Birds

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

March’s Lion

March has come in like a lion for the smallest Johnston – hoping it will go out like a lamb. Lydia had been doing well earlier in the week, flashing smiles to her favorite nurses and getting her dancing legs going again. As the week has gone on, she has had an increasing amount of fluid and they have not been able to keep up with diuretics. She has been on lasix most of her life and and even with a continuous lasix drip, diuril IV, aldactarone and methazolamide in her G-Jtube, she has still puffed up so severely she was unable to even open her eyes. I’ve seen her quite puffy before but this is the worst she’s ever been. She’s taken on a Sponge Bob figure with her arms and legs still twiggy and all her edema in her head and torso. Last night she was so uncomfortable and working against the vent that they had to end up putting the vecuronium back on board to keep her paralyzed so she could breathe easier. She is now on a different medicine, Bumex in an IV drip and starting to get a little more fluid off. Her kidney function still remains good so it seems this may be a cardiac issue. She ended up getting another blood transfusion today (side note: sure glad we’re not JW’s and my god is okay with transfusions). The plan is to take her the cardiac cath on Tuesday to recheck all her pressures and flow. They are saying she may need the band on her pulmonary artery tightened which unfortunately mean yet another OR trip, another open chest incision and yet another delay in project esophagus. I keep thinking surely someday she will get a small break.

This week marked the one year anniversary of Dr. Sharp giving Lydia a surprise spit fistula and cutting away the lower end of her esophagus making the task of putting it together much more difficult and complex. Not a day goes by that I don’t deeply regret sending her to the OR that day. When the OR nurses were getting ready to take her down and Dr. Sharp decided then would be a good time to tell us she had a 50/50 chance of surviving surgery, it took every ounce of me not to scream “stop everything!” How I wish my pragmatic and calmer side had not won that day and maybe things would somehow be different. I miss her terribly and ache for the day when she can be home and meet her family.

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5 Comments

  1. Heather McKaig

    Amanda, you are one of the strongest people I have ever met. You have met the challenges of the past year and a half with such grace. Your courage and faith is what allowed you to make such a difficult choice when faced with such horrific odds, at not just the moment you mentioned, but countless others. There are a million cliches that come to mind when I hear you say you wish you had made the other choice, but whenever I let any of them enter my mind, I am reminded of the movie Sliding Doors (Oscar anyone?) and how things being different does not always mean things would be better. I know none of this makes what you’re going through any easier, but you have an army of supporters going through it with you (2nd only to Charlie Sheen), and I know this one in particular is happy to help carry a little of the weight. If there’s anyway that I can, just say the word. And, tell Lydia and Ava there’s a set of Sarah tickets waiting for them when they’re old enough to join us.

  2. Aunt KayKay

    Amanda,

    I teared up as I read this. You know the most important thing about hindsight? It is always 20/20. We all live life making the BEST decisions we can with the information we have at the time. When my mom and I talk about everything Dad went through, we regret SO MANY of our choices… to no avail. We believed we made the best choices we could– even though all options always sucked. You and Clay are doing the best you know how with every choice you make– and you are a medical professional– so far ahead of so many other people in so many ways.

    I struggle constantly with accepting things as they are rather than things being the way I wish they were or the way I want them to be. I guess it’s part of our humanity?

    I hesitate to type this because I know there are no words to comfort you. But I want you to know that I wish I COULD be of comfort… inconsolable as things may seem.

    Love you always. ~K.

  3. Leneia Weston

    Sincerely, you are the toughest Mom I know. Crying as I read, I cannot fathom the experiences you’re enduring. Whatever I can do, I’ll do without question if you as much as THINK to ask… I know there’s nothing I can say, and nothing I can do except weep with you, for you, and love you and your family so dearly. You’re all so deeply in my heart. Love love love love love and love.
    ~Leneia

  4. Susie Dagley

    Amanda

    My heart breaks for you and Clay and also for Pam. One should never have to make such hard decisions. It is mental torture. That destructive thinking put me in a pit of anxiety and depression back when I was about your age. If you need medication to help you cope or need to talk to a professional about what all you are going through please do it now If you need a sitter or if Pam needs me to go with her to see Lydia I can . We all want to help so just say the word.

    Love you much-Susie

    • cindy shultz

      I know there are no words that make what you all are going through any easier. Our son was born with a tethered spine and underwent surgeries as a small child. Nothing is as difficult as watching your small child hurting and not knowing what will happen or the overall feeling of helplessness. What we experienced can’t even touch the pain and fear that you and Clay must be feeling. I don’t know you and I only know Clay through his amazing music but I so appreciate you letting us be a small part of this trying journey. I truly believe that the more prayers, the better. We will pray and send positive thoughts. The strength that you and Clay have is amazing and inspiring. You are truly special people and I pray that this life path will soon turn in a positive directions. Thoughts and prayers to all!!!

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