The main questions I’m fielding: Is Caitlin feeling better? Is Caitlin still in the hospital or is she home? Caitlin is not feeling better, and is not going to be better until after transplant. Her pulmonary hypertension is severe and contributing to her high oxygen needs. In addition to her nasal cannula, she wears a mask that simultaneously delivers extra, high-flow oxygen. It’s hard for her to do anything, as she gets breathless and quickly loses oxygen saturation in her blood. She needs a lot of help to do basic things, to move from the bed to the chair, or to shower—a shower is a half-hour, 2-person effort. And a wheelchair ride off the floor, which she and I did alone and fairly easily 2 weeks ago, had to be done very slowly yesterday, with four oxygen tanks and her nurse accompanying us.
At this point, she will remain in the hospital until transplant.
I didn’t post about last week’s offer of lungs until after it was a no-go, because we knew from the start that there was a good chance that the lungs wouldn’t be viable. That turned out to be true. (Only 1 was viable, but we learned that a man in desperate need of 1 lung received it on Thanksgiving.)
These are the days we dreaded might happen. It hurts and alarms us to see her struggling. She is in a constant state of nausea, discomfort, and the anxiety that comes from the inability to take a deep breath. But she is in the home stretch. She is a top priority with the transplant team here and they are one of the best.
Thank you, everyone, for all the prayers you are directing her way. When we think of the network of friends and friends of friends who all care and root for her, it makes us feel connected and comforted.
Please add a prayer, too, for her eventual donor. I think about that person a lot.
A text from Caitlin:
I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.
Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.
So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now. Joni Mitchell’s words feel like permission to let go.
I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.
My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.
Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.
** There will be lots of updates that I won’t be posting to Facebook.
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