We had an urgent (not emergency, but urgent) cardiology
appointment early this afternoon in Dayton. Ellie’s had a few rough days in a row and we’re
pretty sure she’s growing out of her PA band.
Our cardiologist agrees. The only
way to adjust it is with surgery… so it’ll be removed when we go to Boston for
her heart surgery soon. Ellie had an
EKG, a chest x-ray, and an echo done today.
Ellie’s having trouble maintaining her oxygen saturation goal of 75%
without supplemental oxygen. This is not
the norm for her… but it looks like it’ll be her norm moving forward until we
can get her surgery done. She’s a little
blue at times… lips and fingertips are a little purple. The biggest difference is the look in her
eyes. She still shares countless smiles,
but she’s getting tired easily right now and she looks at us with pitiful,
watery eyes all the time. Soooo… it’s
time to get this kid fixed up. We should
hear back from Boston on a surgery schedule by the end of the week. Dr. Luby would like to see us in Boston by
the end of the month.
Ellie's EKG today
We were in the office for about 3 hours – left the house at
11:30am and were headed back around 3:15ish.
About 15 minutes into our drive home, our van started squealing (sounded
like the transmission was shot). Brandon
pulled to the shoulder right away and popped the hood. We were on a very busy stretch of I-75. We found out that when our oil had been
changed earlier, the old filter gasket stuck and the new gasket wasn’t able to
make a good seal, our oil had slowly leaked out during our drive. The issue wasn’t what happened to get us
there… the issue was that we were stuck on the side of interstate with a ventilator-dependent
baby with only half of the battery life remaining on her ventilator (about 3
hours left). I called our roadside
assistance. They said they could get a
tow truck there, but all estimates were at about 3 hours… we’d be out of
battery before we were home. Brandon had
already removed the oil filter and removed the extra gasket. He put the filter back on and ran about a
mile up the closest ramp and bought 5 quarts of oil to replace the lost
oil. Then he tried to start ‘er up. Nothing.
The dash lights were out… like the battery was dead from having the
hazards on. I don’t know for sure.
A kind soul pulled up behind us. The woman who got out was none other than the
nurse from our cardiologist’s office who just walked me to radiology with Ellie
about an hour or so prior. What are the
chances? This was a nurse that we’d
maybe had before… if so, we’d only met briefly.
Today, though, she walked with us to radiology and I had Ellie in just
her diaper (she’d just gotten weighed).
This nurse had asked about Ellie’s ladybug g-tube pad. Here, her nephew has a trach and a g-tube and
she was interested in maybe getting some cool Ohio State pads for him. We struck up a lengthy conversation about trachs
and hospital experiences and such.
When she pulled up behind us, we realized that neither of us
had jumper cables (dang it… I’d just taken mine out a little while ago). So Becky, the nurse, took me to the closest
truck stop so I could pick up some cables.
During the quick trip she said that she drove past and recognized me,
knew that Ellie had limited battery life and drove up an exit to turn around
and check on us. She told herself that
if we were still there when she came around, that she’d stop and help. She called it God-ordained. I call these God moments. Just before we got back to B and Ellie, a
local police officer stopped to help. We
tried to jump the van - to no avail.
With still too long to wait on the tow truck, the officer called a local
shop that had a truck there in about 15 minutes. We had to follow the truck to the drop-off
and pay the driver, fill out paperwork, etc.
Ellie was NOT impressed with this pit stop
After this, Becky drove us home.
To say this was out of her way would be a gross understatement. This took up two-and-a-half hours of her
evening. We talked schools, we talked kids,
we talked churches. As it turns out, we
actually know some of the same people. Brandon
talked to her about LPN school and the transition into an RN program. It was a great experience… GREAT! Our van motor might be toast, but we met an
awesome person along the side of the road.
We finally made it home around 6:30pm.
We weren’t home for more than five or ten minutes when our ventilator
alarmed as the battery was dying. Talk
about God’s timing! From now on, we may
pull the battery out of our stationary vent to tote along with us in case of
emergencies like this. So grateful for
the kind soul who turned a lousy event into a nice experience!
P.S. Here are a few bonus pictures for your enjoyment...
The boys with their silly faces on
Lance got up a little too early, then snuggled up close to Ellie and fell asleep on her boppy
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