Baby Zoe – A Christmas Miracle
This Christmas Day, baby Zoe arrived early into the world, a 3 pound, 4 ounce bundle of love. She’ll need heart surgery as soon as she’s strong enough. Thankfully she’s in Boston at one of the world’s best children’s hospitals, and has loving parents and their extended families surrounding her. As soon as I’m allowed, I plan to spoil this little girl as much as a crazy grand-auntie is allowed.
I shared with her mom and dad today the idea of setting up a CaringBridge account. It’s sort of like a blog you keep for your inner circle of friends and family, that lets you update everyone at once about a loved one’s medical journey. As I sent them a link, I read over my posts from 2013– a real-time journal of when our daughter Jess, then 26, was hospitalized with a paralyzing nerve disorder called Guillain-Barre Syndrome. Wow, did it bring me right back – crazy with worry, striving for calm, bargaining with God.
As an organization that represents patients’ wants and needs, I should probably write this New Year’s Eve about PVI’s successes in 2015 and plans for next year. But frankly I find myself grateful for those times the health care system has worked well for my family – when we got the right diagnosis, at the right time, with the right treatment. That’s surely something to celebrate. Since PVI is asking for your story of medical care, I thought I would share mine too…or at least an excerpt from a time I was extraordinarily grateful doctors — while not perfect — had answers for us. Here’s hoping that like Jess, and Baby Zoe, and my own mom and brother, modern medicine can be there for you, too.
(May 24, 2013) In the last few days we watched helplessly as Jess fell into the grip of Guillain-Barre Syndrome. We think the five infusion treatments have done what was hoped: arrest her symptoms before they gallop out of control, along with the possibility of total paralysis and a ventilator. She is still able to walk with a cane, she can shower herself while sitting down (can dress herself except for her shoes), and thankfully she is beginning to eat a bit. Unfortunately in the space of one day her face became partially paralyzed, and she can’t smile at all. She knew she would lose some motor ability, but this was an unexpected and especially tough blow. But the good news is it should all reverse in time. She will need physical therapy for a while to keep her muscles in shape while the nerves regenerate, and she’ll have to be patient with herself. On top of that yesterday/today we’ve also been dealing with two other diagnoses: an active viral infection inflaming her liver, and a possible Lyme disease diagnosis. Test results tomorrow should tell us more. The liver enzymes need to be trending downward before they can comfortably discharge her. Initially they were talking rehab after the hospital and of course we said “wrong answer”. She will come home with us and we will take whatever steps we need to to support her recovery at home.
Jess undergoing tests for nerve function
Jess’ bravery and good cheer as she’s been slammed with one setback after another have an inspiration to watch – through a nightmare of uncontrollable pain, nausea, vomiting, pre-dawn bloodletting, a seized-up intestinal tract, doctors’ orders for pain meds and plans that seem to vanish into thin air, the futility of trying to get a prescribed medication during the two-hour process called “shift change”, writhing in agony at 2 AM because there’s no comfortable position to lie in, food that smells like steamed gym socks, and a test that today had the neurology team sticking three-inch long needles deep into Jess’ muscles to assess her nerve function. They didn’t just stick them in; thy had to swirl them around this way and that. I could hardly believe what I was watching. Jess’ only response was the occasional sharp intake of breath and a tear slipping down her cheek.
As torturous as all this is, we’re fortified by the reality that though this may get very bad horribly quickly, over time it usually gets completely better. That’s more than some can say. And the silver lining is the incredible support and love within this family and from the many friends, friends-of-friends, the medical professionals and who’ve counseled and helped us and made phone calls and smoothed the path, and strangers who’ve reached out with a kind word, encouragement, flowers, food and hugs. Lisa, one of our nurses, deserves a whole blog post just about her.
The universe has a plan we don’t always understand in real time…but in pain and challenge there is opportunity to grow. My guess is Jess will lead the way.
Wishing you many blessings in the New Year! Hoping you’ll add your stories and check back for the rest of mine.
