Sunday, December 13, 2009


And we had such a nice morning, too! But look at that face. That's Jane at the end of our little day together, just started to emerge from her crankfest.

Here, let me back up a bit. Sarah and I went down to spend the morning with our girl. We actually got there before 9:30, a personal best. I tried to get Jane to breastfeed again, but she was not having it. She was all, "Nuh-uh. You are never here this early. I don't roll like that." But the three of us had a nice cozy time together anyway, reading books and being cuddly and photo-worthy (Awesome Nurse Sue got a cute shot of the three of us... wait, I'll take a picture:

... there you go. Quality isn't great, but it'll do.)

Where was I? Right. Cuddly time, everyone's happy. We put Jane back to bed, had an early picnic lunch in the family/waiting room and came back to give Jane a bath. More adorable photo ops ensued. (I think Awesome Nurse Heather got a shot, but we had to go before they could make a print for us.) Sarah helped, Jane loved it, etc etc.

And then. Oh, and then.

Invisible readers, have I described the rig that keeps Jane's trach in place? There are these things called trach ties that keep the trach where it belongs. It's basically a collar with velcro tabs. And they need to be changed daily. Sometimes twice. Sometimes more often, if they get really gross. So Awesome Nurse Sue let me help out for the first time today. WORST THING EVER. Ugh. It was awful. So awful. Jane hates it, and fights it so much it takes at least two people to hold her down and get it done. You have to lift her numerous chins up out of the way AND hold the trach in place while you clean the wound and her neck and then swap out the old ties for the new. It took twenty stressful minutes, with Sue leading the way, Respiratory Therapist Tim holding the trach and me assisting and we were all sweaty and shaken afterward. And I have to do this myself eventually! I can't express how much that sucks.

Meanwhile, they had done a morning blood gas on Jane that showed her CO2 level had gone up to 73 (up from 55 or so the day before, which was so good that for Jane it was a little too good). They were a little worried, so they tried again after we left, and the CO2 had gone up to 86. So they dropped her pressure from 16 to 12 -- EXACTLY what Dr. Boston said NOT TO DO. And her CO2 went up to 126. We didn't know it could go that high. Everyone there freaked and put her back to where her settings were before she went off the rate last night.

JeSUS. I guess tomorrow Jane's docs are going to consult directly with Dr. Boston and develop a two-week plan.

Whatever. I'm trying to focus on the nice morning we'd had, but damn. That was just not the way we wanted this to go after Tom's conversation with Dr. Boston last night.


Hey, listen, today wasn't all bad. Sarah and I were supposed to meet our awesome friends Maggie and Allison and go to the Polar Express train ride, but winter had other ideas about that. So we went to plan B and had dinner with just the four of us girls. The little girls worse their jammies and drank cocoa, and we grown ups wore regular clothes and drank wine. It was just the thing. And the girls got to watch the Charlie Brown Christmas special. Who needs a fancy train when you can sip cocoa and watch classic holiday programming in your pjs while snow covers the world around you?

So there, crappy day and rotten driving conditions! Pthththt!


Rachel said...

Oh, sorry to hear about the crappy day! I hope that the trach tie changes are something that will get easier after her neck has healed a bit more.

artandsoul said...

It's amazing how Jane's cuteness can make all that other stuff pale in comparison. I'll be sending you some extra special vibes for dealing with the trach and getting used to such an amazingly different territory.

When they thought my daughter Susan had PKU, and for a year we had to be ultra vigilant about her food, it totally threw us because we just felt so comfortable with what we had learned from these other two that we'd just had!

What we did is nothing compared to what you're doing, but I think the essence of "hey what the heck?" is similar!

Love the photo with the three of you snuggling. And cocoa, pajamas and Charlie Brown? Where do I sign up?