Friday, January 8, 2010

Under A Spell

Girlie's got herself a new crib -- same space, but a teeny little bed. The hope is that this little crate of a bed will let the nurses put her in a position that helps keep her more flexed and less splayed out but still lets them work on her easily. There is so much SPACE around her now. It's pretty rockin'.


What's this? Could it be... maybe... just a teensy hint of... A SMILE? Oh, I think so. She was smiling at Dr. R the other day, and Cute Nurse Martha (who was shadowing Awesome Nurse Donna today and played with Jane all morning). I think I got a little smirk, but poor Donna's still waiting for something besides a skeptical eye brow lift.


Ah, contented girl.


But all is not cute and almost-smiley in Janeland. No, no. That would be, like, easy and comforting and stuff.

*deep breath*

Okay. Have we talked about BPD spells yet? I don't think we have. Oh, wait -- remember that awful day when Jane clamped down? The bronchospasm thingy? She had the first one on the 30th. That was what people call a BPD spell. So, it seems that kids with BPD often develop these episodes during which the oxygen level in the blood goes WAY down, and they need big fat oxygen support and sometimes medicines and sometimes have to be bagged to get the air in until they can breathe on their own. You know where this is going, right?

Jane's been having them. Not every day, but she did have two today, and it suuuuucked. Really, really sucked. People, she turns BLUE. And CAN'T BREATHE (but her heartrate was steady as a rock, thank god). So, why now? And what's the trigger? No one knows. But I have a theory about some of these episodes. Jane was in my lap when she had her second spell, and this is what I saw:

Jane gets nebulizer treatments every six hours (sort of like mega asthma treatments). Twenty-five minutes after she should have gotten the treatment (the RT was busy with a tiny new baby), I noticed she was breathing in what would have been a wheezy way if you could hear it -- she was clearly working to push the air out, and she started to desat (the oxygen level in her blood went down). A few minutes later, she started to cry, and desatted more -- Donna, of course, was increasing her oxygen all the while. And then she turned blue, with her sats in the 60s (I think they dipped down to the high 50s briefly), where they sat for a while. They gave her TWO nebulizer treatments, morphine and ativan and she came up and was lovely for the rest of the day.

I think her anxiety sent her into the spell. Almost like a panic attack, more or less. I think that when she felt her chest tightening she freaked out because she knows that chest tightening leads to not breathing = bad. But how do you tell a baby how to relax so she can breathe and feel better? Let me tell you, holding a pacifier and stroking her head did NOT do it.

So Dr. Google... I mean, Tom and I have been feverishly researching BPD spells and their causes and what they're symptomatic of and how to deal with them and and and...

We can't wait for her to get to Boston. Fresh eyes, fewer assumptions (you have no idea how many times I've heard "Oh, that's just Jane" over these past 170 days). I don't want to slag on her doctors. We just need some new ideas, new ways of thinking. Bring it, Boston. Bring it ON.

2 comments:

artandsoul said...

Space is always nice! She looks quite comfy in her new bed.

Sorry you had to go through the experience of watching your child turn blue in your arms. Sheesh! I know she has a lot of challenges but she is certainly teaching me that we humans are QUITE resilient and strong!

Your observations sound right on to me. As someone who has suffered Panic and Anxiety Disorder (although I have to stop here and say it is under control and not something to worry about) that is EXACTLY how it works. Feeling a familiar sensation and unconsciously making an assumption of "what that means" is the kind of underlying mode of Panic.

As Jane grows up it will be really important to teach her how to self-soothe, self-talk and to meditate. Not in a guru-on-the-mountaintop way but in a practical, down-to-earth way. This has been crucial for me. There are breathing techniques, yoga practices and visualizations (think imagination games) that bring about physiological changes -- lower heart rate, easier breathing, less dizziness, etc. And, the panic and anxiety fades.

Well, Tia, one more area of the medical universe you'll become an expert in! Bet you're thrilled. :)

Hope the weekend is a good one!

Cindy

Anonymous said...

Please let me know when you'll be in Boston. I'd love a quick peek (even from the other room, if I could)and if Miss Sarah would like a playdate with Bridget, we're here. Love, Jude from Boston