Amy and I got back around 10:00 pm last night to discover that it had
been a very fussy day. We were surprised because we'd had such a good 24
hours, we didn't expect to loose SO MUCH ground so quickly.
Heart Rate was 198 resting when we walked in the door. Resting was not on the agenda last night.
Since 10:00 pm either mom or dad has had to be physically interacting
with her, soothing her, rocking her, pumping sweet-eze into her like
it's rocket fuel...whatever. Average heart rate overnight was "above
200" according to the telemetry reported during rounds. I wasn't
watching it every minute, but I'd guess that statement was accurate if
not particularly precise...average above 215 would probably be
closer...and pushing above 220 for the last two hours is a guarantee.
Much of the night was just spent "holding on until 8:00 am and the next
dose of coreg" which turned into "holding on until rounds" which turned
into now just "holding on for some labs" to come back.
night, they discovered that one of her ports on her PICC line was
clotted off. Unfortunately, it was the one sending the critically needed
milrinone to her heart. They spent about three hours working to clear
the line, but the stress is evident and there's a possible complication.
She's now running a fever, and given how sharply she fell off the
recent improvements, they're suspecting an infection. An infection at a
site anywhere related to the PICC could turn into (or already be) a very
frightening infection of the heart.
If it's not an infection
of the heart, but just a general infection, we might be able to salvage
this and get back on the track we were on before.
Or it's not an infection at all, just a rapid decline in heart function.
Two of those possibilities will result in an immediate return to the
CICU. An infection of the heart would be an almost ridiculously
dangerous situation given her poor function...and frankly I can't really
wrap my mind around how supremely bad that would be.
heart function is just that poor...if it's not influenced by an
infection or other factor...then she'll be intubated and prepped for
"next stage of care" which most likely means a Berlin Heart.
Unfortunately for infants under 10 lbs, there's a much higher risk of
stroke on the device. Little miss weighs 8 lbs 7 oz. We don't want her
to outgrow her dilated cardiomyopathy too quickly or we risk running out
of time...but we need her to grow faster or risk having a stroke on the
What we really need is for the universe to stop throwing her impossible pitches while she's batting with a feather duster.
Right now, we wait for labs. And pack up in preparation to go back to
CICU...losing all the progress we've made so far. But worse, we're
sitting here on the precipice. Our darkest fears are lurking very close
to the path, just out of sight and growling hungrily in the shadows all