Sunday, January 17, 2010

The Road Ahead

Tom made the drive down today, and we finally got to meet the illustrious Dr LR (formerly known as Dr Boston). He's an impressive guy. Smart, thoughtful, straightforward, dedicated. My first impression of him was excellent; I wish I could say the same about our first conversation.

It was not a happy talk, invisible readers. It wasn't ALL doom and gloom, but the rays of sunshine were pretty thin amongst a lot of dark clouds. He talked to us for about an hour (maybe? probably less, but it felt like an hour) about Jane and her prospects. Tom's takeaway was that there are still reasons to be hopeful about Jane. My takeaway? He was laying some thoughtful groundwork for a (potential) difficult conversation in the future.

Jane's got a lot of hurdles to jump before Dr LR will truly feel encouraged. The first one, the big one this week, is getting off the paralytic. I know, I know, Jane was taken off it yesterday afternoon. And then she went back on at three o'clock in the morning. Aaand then she was taken off at noon today. (As of 9:30 pm she was still off.) She's just having a hard time keeping her saturation levels up without it. Simply put, she's got to be able to do that for herself. Dr LR would like to see her off the paralytic in the next couple of days, or in his view it becomes a quality of life issue. QUALITY OF LIFE. He used that phrase not infrequently during our little face to face.

I hate that whatever happened last week (the pneumonia or virus or infection or whatever the hell was going on) happened. They're seeing her at just about the worst she's been. He was talking about how important it's going to be that we read her cues to figure out what she's trying to tell us, whether that be "I'm tired, I've done all I can." or "I've still got fight in me." And I'm sorry but I'm just not there. I know part of his job is to pave the way for us to deal with that kind of thing but WE'RE NOT THERE. JANE IS NOT THERE.


Invisible readers, friends of Jane, it is once again time to light the smudge sticks, fire up the candles, send out prayers and good thoughts and positive energy, and enlist the angels and saints and spirit guides, to help put our girl's feet back on the road home. VIBE ON.

11 comments:

Karen said...

Oh, Tia...I wish there was something to say that would make this all better. Jane and your family are in our prayers.

judasfamily said...

Hi there,

I just read your entire blog. What a journey. You are a great writer and I am glad you have been using this outlet. I know a lot of other families who have really liked having a blog. It can be cathartic, it can be fun and it helps streamline all of the communicating you feel obligated to do. Plus it is fun to show off your daughter in the photos - a huge part of being a parent!

What is there to say? I am sorry that she is currently not feeling well, but I have every confidence that she will show those Boston folks her true stripes and you will be able to move forward together. Those "talks" really stink - there is no way for them to be fun. But, especially people new on her case will feel obligated to discuss worst case scenarios so they feel confident that they have communicated 'appropriately' with you.

I heard Dr. LR speak at a conference and was very impressed by him. I think you've got one of the best. Try not to be too freaked by some of the style differences (open system suctioning, etc). I don't think it is clear how much difference some of those things make - especially at her age. I am thrilled they feed you. Maybe we can work that into our Baby Friendly Initiative.

The nursery is not the same without you guys and Jane. You are some of the greatest parents we have ever seen!! You are very positive and really wonderful to deal with. You have never asked for much - and certainly never been unreasonable in your requests.

I am happy to have been a part of the first leg of the journey and look forward to being a part of your homecare team

Your neighbor in South Ryegate, Mary Lou

Rachel said...

Candle lit. It's my very favorite candle (a lovely tuberose candle from Illuminations), but I haven't used it in several years, so it has some cat fur burning off right now. Hopefully that will be like Jane's life - really stinky for awhile, but with lots of good things to come. I'm terribly sorry that they're meeting Jane under such circumstances - how tough for them not to be seeing her at her normal fighting best.

Anonymous said...

So much love from the beazle and shawnie. Bea, for reasons I don't fully understand, thinks that Jane is her baby sister and includes 'her baby sister Jane' in her prayers every night.

Meredith said...

Thinking really, really hard for and about you all. Jane, you make that doctor seem a fool for doubting you for one second, you hear me?

Love, Meredith

Anonymous said...

Lots of love coming from Miles and Calvin and I. We are wrapping up invisible parcels of strength and hope to send over to Boston for you. Sue/Zinny

Raspberry said...

What Meredith said, in spades. Jane-y, you've got lots of fight left in you. You are such a strong girl to have made it this far. People all over the world are pulling for you, sweet girl. Tia--soon I'll hug you in person, but in the meantime, I'm sending you the strongest lovingest vibes imaginable. To all of you.

Cate said...

oh, Jane. All my best thoughts to you.

mommatosena said...

Had to find a computer to check on Miss Jane. I am sorry to read that difficult conversations are being had and that Jane arrived in Boston feeling her worst. I really wish for you all that things could just be uneventful just once; I can't even imagine having to hear a conversation that even is a drive by to QOL! I don't think Jane has even begun to tap her reserves of fight. She is a tough kid and needs some time to rebound and lighting candles and consulting oracles and double down on the prayers. She will get through this...you will get through this...prolly with a few extra grey hairs but alas this road leads to nowhere but home. As always praying for strength and peace during this incredibly trying time.

artandsoul said...

Hi Tia - when I look at the beautiful pictures of your darling daughter I see plenty of fight, and plenty of life. Our Girl Jane will come through this (and so will her mom and family!) to the other side. Extravagent living is ahead of Jane. I know you can feel that.

Not going to be wasting time on the "why" questions down here, just going to focus on the incredibly powerful positive love and affirmation vibes that you all need to walk this next part of the journey.

Sending you love, peace and strength. And, if there is anything - anything at all - you need or want or that someone from far away can do, please say!

Til then I'll light all the candles, and say the Rosaries for Jane ... and know what she is on many, many lists of fervent pray-ers.

Hugs - Cindy

Grace said...

Oh, what a tough conversation to have. Redoubled vibes headed southwest. I'm so glad you'll be meeting Raspberry soon and that she and your family are there to support you in person.