Friday, November 6, 2009


Okay, so I'm not exactly retracting yesterday's post, but I'm a little less angry. Let's just call that a little exercise in primal yell therapy. Turns out there's another factor at play here. The CT scan yesterday showed that the funky lobe is turning into a problem. It's overinflated and pressing on the rest of the lung, making it hard for the rest of the lung to work well.

But still. I'm not thrilled with how the last two weeks went. The nurses and RTs have been outstanding all along, but the docs weren't the steady presence they, um, might have been. But enough said about that. Let me move on to the meeting. 

It was the two of us, Dr. Congenial, a nurse practitioner, two of Jane's primary nurses, Awesome Developmental Therapist Thea, and our lovely social worker Cathy. Tom immediately grabbed control of the meeting and laid out what he and I have been thinking in a cogent and impressive manner, I contributed my two cents ("Why did this happen and how are you going to fix it and how come you guys messed everything up anyway???") and Dr. Congenial validated our feelings and asked for input from everyone else and we all got up and left. No, not really.

We said we basically wanted to reset Jane and try to get her to a point where we could start over with a well-considered plan. Insofar as that's possible, of course. The primaries said that Jane's current status is a huge departure for her, and suggested a consult with Boston Children's Hospital.

Dr. Congenial agreed that Jane needed a new plan that everyone would follow barring any new incidents. He agreed to consult with Boston Children's. He agreed that she needed to be treated as a chronic patient and not an acute one. He agreed that she needed time to adjust to new changes. He was, in a word, agreeable.

Pretty much we walked out of there having decided to start Jane on another steroid course to buy her some time to get more stable, and to leave the vent alone for the time being. And maybe go back up some on the nitric. And they've restarted her on the inhaled bronchodilator they'd suspended on Tuesday.

The whole trach thing? Hardly mentioned. Therapist Thea brought it up only as something to keep in the back of our minds as something that, after the initial set back from the surgery, would give Jane an edge developmentally. Those damn tubes are going to start holding her back. But I think this decision to go with steroids for a while may give her a chance to regain some ground she lost over the last week in particular. Oh, and they're going to sedate her a little again to help calm her so she's not working so hard. I'm just hoping this gives her a fair shot at extubation.

Of course, they're going to have to wean her off all this stuff again, and we may run right back into these same problems. And no one really knows what to do about the funky lobe, so we're all waiting on the consult from Boston, and the pulmonologist is going to be brought back in again. And they may do a bronchoscopy to see what they can see from the inside.

I don't know, my friends. I'm not sure how I'm feeling about all this. Tired, yes. Overwhelmed, you betcha. But confident? Not hardly.


annachorn said...

Tia, I'm so sorry this is not getting any better - for you and Tom, and especially for Jane. And, I'm quite frankly amazed, considering the facility, that there hasn't been one doc overseeing ALL of her care. Has seemed to me for some time too many hands tinkering here. Not much consistency. Not a whole lot of success, considering all she's been through. Not good. The fact that they're suggesting a consult with Boston Children's is probably a good thing, but also an admission that they're over their heads here. Maybe something they should have recognized much sooner. No one wants to see their loved one used as an experiment. You and Tom have both been so amazing. But this transcends anything most of us have ever experienced, or can even begin to imagine. I don't honestly even know what to say except that you are all in my thoughts and prayers. Love, Ann

Rachel said...

I'm sure that you are tired and overwhelmed! I'm glad that both of you are doing your best to advocate for Jane though. I know I'm majorly impressed with how much time the two of you have managed to spend at the hospital. It blows my mind!

artandsoul said...

I'm rooting for you down here. Hoping that you get to feel some firm footing as you mother your child on this new territory.

Stay strong, vent when you have to. Trust your gut. Take lots of pictures because she is growing pretty fast.

One day this will all be a weird, fuzzy story. For now, you're just amazing.

All of you.


Tasha said...

We couldn't get Maryn off the vent either. Tried high humidity, high-flow with steriods. Helped for a bit, but we ended up with the trach anyway. It was the right thing for us to do. But it is a scary though. Feel free to email me with thoughts/questions if you would like.

Tasha (Margot's friend)

Meredith said...

Thinking of you all. Jane's very lucky to have you as parents.