I woke up a few minutes ago, after falling asleep in Sophia’s bed with her, her arms tightly wrapped around me, mine tightly wrapped around her. She asked me to be with her and hold her until she fell asleep, so she would feel comforted.
She and I have just spent two consecutive nights in the ER. It’s been quite a while since we’ve made a visit to the ER. So long, in fact, I have begun to feel there is more of a breathing space between those dense, dark woods of her first several years and the bright, wide open pasture we have been enjoying. Those years when it was the norm for us.
She was born with a rare “textbook” condition – Congenital Lobar Emphysema. She seemed fine initially, other than her prematurity – born at 32 weeks with Isabella, both girls weighing less than 4 lbs.- but by day 6, she couldn’t keep her oxygen levels up. Extreme swelling of her right side necessitated an x-ray, which revealed the unusual condition. Surgery was 4 hours later – and God was merciful. She made it.
Having no experience at all with a child with one lung, and a floppy airway, Glenn and I took a crash course the first few years. Her first major hospitalization was at 6 months old. I remember trying to get her to nurse at the hospital – which she was desperate to do, but could only do with short, forceful pulls, turning away after each attempt with frustration and deep gasps, flailing her arms and kicking her tiny legs. Sweat dampening her entire body with the effort, while Isabella lay crying next to us on the vinyl hospital couch waiting for her turn. Glenn at home taking care of the other kids – aged 3,4,6,8. The kind nurses sent a young hospital volunteer to our room to ask if I needed help. Of course I said, “No thank you, we’re fine!”
Looking back now – 10 years later, my ignorance is almost embarrassing to me. How little we knew then. How much we know now. Yet still not quite enough.
She’s had innumerable x-rays, bronchoscopies, surgeries, breathing treatments, medications, and ouches. We’ve met intensely dedicated, compassionate, smart hospital people.
Her last surgery was 4 years ago – when a cardiac surgeon stitched the pericardium of her heart to her sternum, that narrow bone at the top of your chest. He had to do this to keep her lung from continuing to herniate over into the space where her right lung used to be. Where the second saline implant sits now. Doing this provides necessary structural support to her chest area, so the left lung won’t grow too large again and squeeze her still-too-soft airway against her spine.
It was especially during that time period we began to see some of the compassion and insight which God was using these experiences to give to her. After one of our trips to Cincinnati Children’s Hospital for a scope, Isabella and Sophia were sitting together on the sofa in the family room. Izzy was admiring the little stuffed animals and trinkets the hospital staff had given Soph while we were there that day. She must have made a comment about them, because suddenly I heard Sophia telling her, “Izzy, it’s ok to want my things, but don’t ever want to be me. Today people hurt me, and took me away from Mommy and Daddy, and it was scary. So you can want my things, but just don’t want to be me.”
She was just shy of seven years old.
But God is still merciful, and after so many years of hospitals and doctors, things are easier.
Until something like now happens. When I look at her and see her slender body working harder than usual to breathe.
Because she has a cold.
We’ve done all the usual things the past 10 days, watch for a fever, begin 4 hour breathing treatments, extra Vitamin C, Ibuprofin to prevent that dreadful pleurisy which she seems prone to get now, and monitor her oxygen levels. But still it’s not enough, and we have to make decisions about what to do.
And then at the hospital, we have to make decisions about what to do. Again. Because the ER doctors don’t know her, I do. And although they have a protocol for children with two lungs, they are unsure and a little intimidated about what to do with her.
I have never yet heard any doctor or nurse tell me they have seen a patient like her before. Instead they say they have never seen anyone like her.
So as she sits next to me, drawing quietly on a piece of paper, little pieces of clothing and accessories for our pencil people, and she tells the doctor we are “shopping for free”, decisions have to be made. Hard decisions about IV’s, and ambulances, and what is the safest and best thing for her.
And suddenly, after 4 hours, things begin to change and we can all see that this time it is mucous plugs. And they have finally moved themselves out of the way, letting her oxygen levels raise back up to normal, and slightly easing the retractions in her throat. X-ray is clear. Breathing treatment has been given. Our options are changing.
I had already told her there was going to be an IV, which had brought uncontrollable, quiet tears from her. Now, an hour later, plans had changed, and we could go home. But the ER doctor had noticed her tears from before, and although I had evaluated that he was a pragmatic kind of man, he was moved by her. He reached out towards her shoulder lightly as he left the room, saying, “It’s gonna be OK, China Doll. You’re going home.”
I woke up a few minutes ago, after falling asleep in Sophia’s bed with her, her arms tightly wrapped around me, mine tightly wrapped around her. I wanted to write this down because I want a memorial for her. A memorial of God’s faithfulness to her, and His kindness to her. Last night as we talked before she fell asleep, she said, “I wish I didn’t get sick.” And I reminded her (and myself) that it was the trial God has given to her, and I sometimes wish I could take it from her. But then she wouldn’t know so well His loving care for her, and how He is using every minute of every sick time to draw her closer to Himself, and grow her faithful and strong – in her soul.
I’m going back up to her now, my little China Doll. I want to keep my eye on her tonight. And my arms wrapped tightly around her. Just counting my blessings.
