Friday, September 25, 2009


We had a big old hour-long conversation with this week's attending about our girl this afternoon, and when we finished I wished I could do the mental equivalent of loosening my belt. My brain was full.

It was a surprisingly upbeat conversation. The doctor is very confident that Jane has turned the corner and we are on our way out of the woods. She explained their strategy with regard to balancing the toxicity of the oxygen she's still getting versus the damage done by the ventilator. Right now, getting her off the oscillator is the higher priority, which is why they're slowly weaning her every day. They're satisfied with Jane's current pattern of oxygen in the 60s during the day and 40s at night, but she said they're going to start to expect more of her there as well. (Tom and I are already there -- isn't it amazing that we're already slightly disappointed that she's still in the 60s when two short weeks ago she was stuck at 100%?)

Let's see. I think I told you they started to wean the systemic steroid she's on (prednisolone). If I didn't, I meant to. There are some scary side effects associated with the long term use of systemic steroids like prednisolone, including cerebral palsy. Which would be bad. So they're going to try to have her off that by, I think, some point next week.

What else? She had another head ultrasound this morning, but the report hadn't been released yet when we met. Her eye exam Wednesday showed no progression in the little retinopathy she already has. They're going to keep up with the weekly exam for awhile longer.

The doctor did say Jane'll be coming home, when she comes home, on oxygen at the very least, and possibly on a home ventilator depending on how she does with the weaning. But the doctor was very encouraged by Jane's response to the daily weans they've already been able to make.

So, wow. A lot of good news.

I have to confess, though, that as encouraging as the conversation today was, I was pretty overwhelmed by the end. The thought of all the things we're going to have to deal with, all the developmental issues that haven't even come up yet, the challenges of taking care of an infant who needs such an unusual amount of care... Well, it's a lot. Of COURSE I'm relieved to hear the H word (I even went so far as to start working on turning the guest room into Jane's room a couple days ago), but I'm pretty damn nervous about how we're going to handle taking care of her without having our crew of Awesome Nurses and Respiratory Therapists. Do you think if we ask St. Joel to be a godfather he'll make house calls?

But then I got to give Jane her third bath and felt much better.

I think she liked it, too.


annachorn said...

I can't imagine the conflicting emotions of looking forward to taking Jane home, and scared to death when you do. It IS a lot. And, anyone who's ever been in a difficult medical situation understands and shares that fear. But, I think also we're so grateful for your straight-forwardness, insight and honesty. It is such valuable information because it's so real. One family's struggle, but transcends in so many different ways. But, hey, you have all of us invisible readers (I'm sure many of whom you know). So, maybe we can take a turn coming up and assisting. Hell, we drive an hour or two for a great restaurant meal. You're certainly not going to be without support of all your wonderful family, extended family and friends. Meantime, happy they're trying to wean her off the oscillator and the steroid. And, let's shout AMEN that she's turned that ever-important corner. Always knew she would. So, wow indeed. LOTS of good news.

Sheila Peuchaud said...

I'm sure that ti seems overwhelming to think of taking care of her all by yourselves, without the medical staff of experts. Hell, a lot of first time parents feel that way leaving the hospital with their full-termers. You'll rise to the occasion, but you must be pretty damn tired of rising to occasions long about now.