repost from Clay’s FB note
A note about Lydia’s last 48 hours: she’s stable, she’s safe, but has yet another mountain of challenges to climb.
by Clay Johnston on Wednesday, July 20, 2011 at 10:02pm
May I tell you about the last 48 hours? On Monday, Amanda and I were joking about the call we’d received from Children’s Hospital Boston about their call to Children’s Mercy in Kansas City. In another week or two, they said, she should be ready to take a medical flight back to God’s own time zone and within hugging distance of the rest of her family. While we knew that nothing in Lydia’s history would indicate that she would be ready by then, but it was a nice daydream to have for a few hours.
That night, another call from Lydia’s nurse sounded the alarm about her oxygenation and blood pressure. This wasn’t so unusual, but instead reminded us that Lydia would be on her own timetable. However, at 3:00am, yet another call came in informing us that Lydia was now on the oscillating ventillator, the same vent she was on as an infant, the one that would literally make her vibrate as the air was forced into her lungs in tiny, powerful bursts. Additionally, she was on a number of heart medications to regulate her blood pressure.
By morning, it was clear that it wasn’t helping. We called in to get a report, and Lydia’s nurse gave us solemn news that her condition was still not stable, and in addition, she was showing signs of infection. She then asked if we could come soon, and then broke down crying. We joined her.
Our worst fears surfaced. The cardiologists asked us about our wishes in case of a code, or if we would consider ECMO if she needed it. We canceled everything and scheduled our flights. Grandparents sprung into action with Wyatt and Ava, and we packed, prepared for the worst.
We arrived to a stabilized Lydia, albeit on high vent settings and paralyzed. She looked at least as good as we’d seen her before, and everyone seemed a little more at ease with her condition. The terms “backed away from the cliff” were used. She was deemed strong enough to be taken down to the lab for a cardiac catheterization to try to isolate the cause of her troubles.
She returned from the cath lab in her same state, paralyzed yet stable. Her heart and pulmonary systems are functioning as well as can be expected, which leaves her lungs as a main source of her distress. They are severely damaged from months and months of being on a ventilator, plus the insult of multiple chest surgeries and paralyzation. There is likely some pneumonia, and perhaps some infection to contend with as well.
We had already thrown in the towel on her esophagus for now, and just wanted to get her home; to start being a person. This development makes even that goal a real challenge…but not one she hasn’t faced before. The strategy is to now gradually decrease her vent settings while introducing medications that will hopefully help strengthen her beaten up lungs. This will likely be a slow, methodical, tedious process with a few setbacks.
She’s stable. She’s safe. She’s got a long, painful recovery ahead before we can leave Boston and get back to KC. But our girl is a fighter unlike any we’ve ever seen. We’re here to convince her that it’s time to come home and see how much better life can be…in her own home, with a brother and sister, and all the strength and love she’ll need until the next round begins.
Thank you for your support, your kind words, and your prayers. They strengthen our resolve to do what is necessary for Lydia’s well being. We’ll do our best to keep you posted
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