Monday, January 25, 2010

Conversations, Part Two

Invisible readers and friends of Jane, it's been a hell of a day. After last night, Tom and I didn't know what we were going to encounter at the hospital today when the attending told us on the phone that she and Dr LR wanted to meet with us. We were expecting to have That Conversation. You all know exactly the one I mean.

Turns out, we're not quite there yet. Jane's not quite there yet.

Let me back up and fill in details. Forgive me for lapses or redundancies; I'm not sure what I've told who at this point, so I'll try to be thorough. And, I'm afraid, a little blunt. I'm finding there's far more value in candor than in euphemism right now.

Last night, before Tom and I arrived at the hospital, Jane coded. Through what sounds like truly heroic measures, they brought her back, and after a good initial response to their efforts, she's pretty much just been sitting at a barely-good-enough place. The consensus is that Jane's problem now is a mechanical one. That is, the underlying disease hasn't worsened and there's not likely any new infection she's fighting. It's about the gunk in her lungs. That mucous plug that gave her so much trouble yesterday afternoon was a part of it. There's just a lot of crap in there blocking her airways.

Jane is on massive ventilatory support right now. The dials are turned about as high as they can go. The oscillator works in such a way that she doesn't really take many normal breaths (she did breathe over it when she was healthier, but not now). It's a high-frequency ventilator, which means it sends hundreds of tiny puffs into her every minute. But she's paralyzed and sedated, so she's not breathing on her own, she's not coughing, she's not moving. She's not getting the gunk out on her own, and she's not putting up with the suctioning very well, either. They suction, her sats go down, and she's so delicate right now that it takes her a very long time to recover just to the barely-acceptable level she's been sitting at for the last 36 hours. And her bones have been weakened by the steroids, so they can't really manipulate her to get the gunk out without risking breaking bones.

Here, then, is the dilemma. They know what they need to do to help her (clear the gunk out), but there's not much they can do to get it out because she's so fragile.

Before we sat down, Tom had a conversation this morning looking for advice and guidance from the ever-hopeful Dr R from back north. She said the one promising thing from last night was that the lobe going down meant there was a chance (maybe just a slim one) that the rest of the lung could expand and start working better. And she said that she wants Jane back -- but she can't be transported on the oscillator. And she said that she's been praying for us.

So. So Jane needs to improve, somehow, pretty much on her own. Dr LR was pretty blunt. He is not very hopeful. He hasn't given up, and he's not forcing a timeline or issuing an ultimatum. But if Jane deteriorates, or if she has another acute episode like last night's, or if she's unable to come off the paralytic, then we will have That Conversation. Everyone's listening to Jane very closely right now, wondering if she's going to ask for more time, or ask us to recognize that the fight is over.

24 comments:

Anonymous said...

Your baby Jane could not have more loving, careful listeners than you and Tom. Trust yourselves.

Meredith said...

Sending love to you, and glad your sister is there to give you chicken soup. Wishing you strength, and peace, and a break in the clouds.

Cate said...

Strength and peace seem like the right things to wish, so I'll wish for those too. What a hard hard time you guys are having.

mommatosena said...

Continue to listen; your heart has been true to you through this journey and Jane can feel your love and all the prayers. Hope the chicken soup and some tea in bed offered you a bit of respite. Thinking of you all.

Christine E. said...

Sending my love and best wishes and prayers for Jane and for you.

Raspberry said...

A creative interpretation (by Rabbi Rami Shapiro) of a central Jewish prayer keeps coming up for me, b/c of its essential first and last line, and I offer it for what it's worth:

----

We are loved by an unending love.
We are embraced by arms that find us even when we are hidden from ourselves.
We are touched by fingers that soothe us even when we are too proud for soothing.
We are counseled by voices that guide us even when we are too embittered to hear.
We are loved by an unending love.
We are supported by hands that uplift us even in the midst of a fall.

We are urged on by eyes that meet us even when we are too weak for meeting.
We are loved by an unending love.
Embraced, touched, soothed, and counseled,
Ours are the arms, the fingers, the voices;
Ours are the hands, the eyes, the smiles;
We are loved by an unending love.

---

I can't believe you are going through this, that Jane is struggling so hard, that this is all so hard.

We're all throwing ourselves in with that unending love, embracing you across the miles.

Karen said...

I think strength and peace are right for now as well so I will pray that you will have both. And Tia, thank you for updating us. With everything you are going through, I can only hope that somehow writing it down is cathartic for you and maybe provides a little clarity in the fog.

Anonymous said...

Also sending love, vibes, strength, healing, and support for all of you. Your grace shines through.

Dale TT

sarah said...

my thoughts and prayers are with the four of you tonight.

Anonymous said...

Just holding you and your family in my thoughts.

Anonymous said...

Tia, Tom, Sara and Jane,

You are all incredible. I feel so much for you going through all of this. You are strong people and you will be guided as this all goes on.

I wish I could give you a hug.
Love, Mary Lou

Anonymous said...

Thoughts, prayers, and hugs for all four of you.

TT Vanilla

Rowena said...

I am sending you and Jane as many good wishes as I have.

Heather/Hibiscus said...

Just want to say that I am so sorry that all of you are going through this; I will be thinking of the four of you and sending strong thoughts especially to beautiful little Jane.

artandsoul said...

Tia - thinking of you all with love, hope and prayers....

Cindy

Cat said...

Sweet Jane - I am sending all of my vibes in your direction. You will be in my thoughts all day today.
Alecto TT

Anonymous said...

Thoughts and prayers with all of you. Sweet baby jane you are an incredible little one, with an incredible family. hugs and kisses to those sweet little cheeks from far away....
love,
ali s.

Karetchko said...

Tia, I am amazed that you're able to give us such a coherent and informative update under such terrible circumstances. I am so, so, so pulling for Jane and hoping for the best for all of you.
-Karin A on TT

Tasha said...

I am fighting with Jane and the rest of you. Come on sweet baby girl.

Rachel said...

Hi Tia,

I found my way over from TT as well. (I lurk a lot over thataway...my screen name's raltim.) Your Jane is a beautiful, strong, amazing little one (with a great name, I must say), and I am sending her, and you, and your family, every good thought and prayer I have.

Rachel/raltim

Anonymous said...

Holding breath and hoping/wishing/praying as hard as we can.
Amber & family

margypargy2008 said...

Tia and Tom, I am sitting on edge with you and my love is with Jane every minute this week.

Laura Herbert said...

I've been thinking of you all nonstop and praying that Baby Jane had a good day today. She's such a little fighter and you're such a wonderful family. She's one lucky girl to have you! You're in my thoughts and prayers always.

Sky Bluesky said...

Tia, it amazes me you're able to write this coherently with all you're going through. I'm sending all kinds of healing vibes and good wishes and positive energy and stuff like that to dear sweet little Jane. And, of course, to you and your family as well.