Three Little Birds

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

KC week in review

After a tearful good-bye to all our Boston friends Lydia arrived to Kansas City around 9pm Monday night. She traveled in style with all the flair and personal attention a lady of her status surely deserves. Fortunately we had an uneventful flight and the KC skyline never looked so good. As I drove to work on Tuesday, I passed the spot where I usually regain cell phone signal and make my morning call to Lydia’s nurses. It was such a blissful moment thinking I can just see her! We’ve had lots of good snuggle time this week that I think we both enjoy. Wyatt and Ava have come down a few times to see her but managing them in the PICU is far more complicated than managing Lydia. They did seem to recognize her right away and like to be held so they can see her in her crib.

As for her new home in the Mercy PICU, I feel like our blissful entry is slowly fading. She had done pretty well the first 3 days and then everyone wants to seem to change everything on her. Infectious disease is now following her here and didn’t like her intense antibiotic regimen so they stopped half of them with plans to stop more later. True to my warnings about abruptly stopping antibiotics, her white cell count went up, she began spiking fevers and was needing more support on the vent. Last night she had low blood pressure and sats so they started her back on dopamine and epi to help with her blood pressures. The ICU docs restarted then stopped again her antibiotics thinking it’s not an infection and more likely pulmonary hypertension. Since I can’t officially place orders on her, my opinion doesn’t carry much weight. Tonight she’s back off the dopa and has been stable all day. The worst news of the week is she had another CT scan with her fever to see if there was any abscess and there is another tracheoesophageal fistula present off the lower end of her esophagus. I don’t know if it has just suddenly come about or if it just didn’t show on the CT scan and esophagram performed in Boston before we left. One of my big worries was we would leave Boston with an unfixed surgical issue and less than a week of being here, that’s what we have. She has not had a fistula since March 2010 and as many times as the surgeons have been in her chest in Boston, it is terribly upsetting that this has reformed. On an extra bonus side to make this stressful issue all the more fun, it also seems that the KC surgeons may start their territorial pissing match as the one on call this weekend told the ICU doc that “we had gone to Boston against their advice” We’ll hopefully meet with someone tomorrow to try to figure something out. Hopefully they’ll be slightly more pleasant and we won’t have to spend the time justifying why we tried to have her corrected at another hospital. Sadly, 16 months ago, our crystal ball just wasn’t working well to show us how long and complicated a decision that would be. It unfortunately looks like something will need to be done to address the fistula or her lungs will never be able to recover but our options are once again crappy vs crappier and hopefully this time we will choose the less crappy route.

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2 Comments

  1. Bev Whorton

    Not having experienced anything near what you all have gone through the past nearly 2 years, I’m not one to give advice except, “Hang in there” – and know that many people are praying for a good outcome for you. God Bless Lydia and her family. Bev Whorton

  2. Rochelle Woodard

    Amanda,
    Wish I had something to say that would really help you! All I can think of is that Lydia is your special little angel. There is a poem that hangs in the chapel at our church:
    My life is but a weaving, between my God and me;
    I do not choose the colors, He worketh steadily.
    Of times He weaveth sorrow, aand I in foolish pride,
    Forget He sees the upper and I the underside.
    Not till the loom is silent, and shuttles cease to fly,
    Will God unroll the canvas and explain the reason why.
    The dark threads are as needful in the skillfull Weaver’s hand,
    As the threads of gold and silver in the pattern He has planned.
    Anoymous

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