Monday, September 7, 2009

Craptastic day, part 2

Or part gazillion, depending on how you're counting. Consecutive days? Two. Number of days it feels like we've aged? Gazillion.

Another truly sucky day, and we can't blame this one on the machines. This morning, after an okay night with no real changes, Jane took a sudden turn for the worse. I mean a real nose-dive. She went from a oxygen saturation level in the 80s or so -- not great but okay -- to the 40s. (The range they want her, or any baby on a vent, in is 85-95.) She was still on the jet. So they tried to switch her to the conventional vent and "bagged her" (lovely phrase, but it's just the hand-operated bellows), and she dropped down to 22. Quick, quick back to the oscillator, add some inhaled steroids and hey, let's drop some big league antibiotics of the sort usually held in reserve because now we have, for sure, no doubt about it PNEUMONIA. There are three different bacteria causing it, one of which has a tendency to become antibiotic resistant, which is why they pulled out the big guns today.

We were already scheduled to talk to the attending physician today about how Jane was doing, but the conversation we had this afternoon was nothing like what we or the doctor had anticipated. The pneumonia came out of nowhere, and instead of talking about Jane's BPD, we were having the horrible "this is the crisis point" conversation.

After that we ate some fermented dairy and extruded carbohydrate stew (Oh, I'm sorry Au Bon Pain; I didn't realize you had a name for that dish. "Mac and cheese", is it? Interesting) and headed back in to the nursery to watch that damn monitor. I swear, in Hell's waiting room, that's the only station the television set plays. Accompanied, of course, by the soundtrack of insanity: Endless Alarms.

Her saturation was back up in the 80s when Tom and I left tonight, but they've got the ventilators set at really high levels. Like, Spinal Tap dial it up to 11 levels. But it's helping, and it's giving the drugs time to kick in.

I'm dying to know how she's doing now (8:45 pm) but we're both scared of making the call.

10 PM UPDATE: No change, except they took her off the paralytics. What's that, you say? I forgot to mention that earlier? Well, they decided to chemically paralyze her today because she's fighting the vent. She's strong enough, and willful enough, to keep breathing over and against the ventilation (which is what made her break the jet yesterday). So she was paralyzed and morphined against the anxiety from the paralysis, and now we're just waiting for the antibiotics to drive back the pneumonia. Fun times!


annachorn said...

Tia, Thanks for the update. Can't imagine how stressed and exhausted you must be, but appreciated the latest info. So admire your courage and devotion. No one is ever prepared to have their life changed in a split second. But, the real measure is how one responds to their challenges. No one could do more than you and Tom are doing, and little Jane is clearly the beneficiary of your unconditional love and support. I focused on the "no change" addendum, along with her being "strong enough and willful enough" to fight the ventilation. Still think our girl is demonstrating her desire to live and I continue to believe she is going to be keeping you and Tom on your toes for the rest of your natural lives. And, more power to her. Love & prayers, Ann

Karen said...

Tia...just wanted to echo Ann's comments above and send you our love and prayers as well. Jane has demonstrated her fighting skills many times over the last few weeks and I think she's still fighting. God bless...Karen