"She's okay, right?"
"Are we still in the yellow zone? Or have we moved to red?"
"Can we make it through the night?"
"If we brought her to the ER, what would they be doing differently than what we can do here?"
"Fingernails look okay? Lips look pink? Toes look good?"
Respiratory infections are by and large just exhausting. We don't sleep because she can't sleep. The added secretions mean a lot more linen and outfit changes. Keeping on top of the breathing treatments means taking the time to sit and do them...around the clock.
The particular URI that presented itself yesterday came with a little surprise. Martha's pump started malfunctioning. After using my whole bag of tricks, I realized it wasn't the pump, but the actual button inside of her was clogged.
This is incredibly complicated. Holy friggin smokes.
Martha's formula is bypassed to her small intestine. She has separate port on her Mic.Key button that goes into her stomach, but it's strictly for meds. If the content in her stomach is too great (like...more than a few teaspoons), it all comes up, she aspirates and winds up with pneumonia.
In theory I could and DID use this port when I absolutely had to, but it runs a huge respiratory risk, especially when Martha is already up coughing and gagging all night anyway. To route the formula, even at a rate half as fast, makes her cough exponentially worse. She doesn't eat enough to sustain herself, and when she's sick she can't eat at all. The clock is ticking.
Using my googling power, Mark and I spent hours last night suctioning with syringes, pumping hot water, flushing and re-flushing the night away. There was a short-term remedy, but today we're back at square one. A call to Martha's gastro specialist gave us another idea before ditching our Trick-or-Treating plans for a road trip to the Children's hospital for a replacement procedure.
They suggested a little acid to dissolve the blockage. You know, just pump the baby's tube with a bit of Coke. I took the bait, and that's my current strategy, and as negligent as it sounds to send Coca-Cola meandering through my daughter's intestinal walls, if it means I can pump hydration and nutrients back in (we are terribly behind...), then it's worth a shot. My very last resort is a very small amount of
My plans for today, tomorrow, and indeed the entire weekend don't include five hours in the car for a five minute replacement procedure. While I wait for the Coke to erode the minute french size of my daughter's tube, I really hope our efforts produce some results. Round one was a loss, but I'll try and try again.
As I remarked to Mark at a painful hour last night whilst surrounded by medical supplies and prescription drugs, "I can't believe they're letting us do this."