So, on Wednesday, Ellie had another heart cath. I think this one took longer than the others,
but she’s kind of a turkey, so we were prepared for that. We had gone into this cath anxiously waiting
to see if Ellie’s pulmonary vascular resistance (PVR) was finally low enough to
make her eligible for her next heart surgery.
When the cardiologist came out of the cath lab, he sat us down to
discuss results. On the positive side,
Ellie’s PVR is now within an acceptable range for surgery. Celebrations!
But the cardiologist wasn’t even really coming to discuss this. His concern now is that the end diastolic
pressure (the pressure when the heart relaxes to refill with blood) in Ellie’s
ventricles has doubled in the last two months.
This wasn’t even something that was on our radar to worry about with
Ellie. Dang it. What this means is that the muscles in Ellie’s
heart don’t get a chance to really rest between contractions. It’s likely reversible at this point, but if it’s
allowed to continue, it can cause her heart to harden and can cause permanent
damage. The kicker on this: they have no idea what caused this pressure
to double. He also said there is an
obstruction in Ellie’s aorta (the main artery coming out of the heart and
moving blood to the body). Punch me in
the face!
He then explained how the next surgery would likely go… the
Glenn procedure plus a Damus-Kaye-Stansel (D-K-S) procedure. The Glenn would clip her superior vena cavas
(the veins that bring blood back to the heart from the head and arms) and dump this
blood right into Ellie’s pulmonary arteries.
The second procedure, the D-K-S, would connect Ellie’s aorta to her
pulmonary arteries. These are major
heart surgeries because they totally reroute her plumbing. They’re risky because changes in blood
pressures and such can greatly impact the flow of blood into and out of her
heart and lungs.
We knew she’d need a Glenn, but didn’t know she’d need the
D-K-S. Of course, we’ll wait until
Tuesday to see what they come up with at the surgical conference. These surgeries would make Ellie’s heart a “one
and a half ventricle repair”, meaning that 50% of her unoxygenated blood is
rerouted straight to her lungs, but the other 50% of unoxygenated blood will
still go into her heart. She has a full,
healthy, left ventricle. The right
ventricle is where the ½ comes in. Did I
lose you yet? Sorry – this is super
complicated to explain. Once we get a
plan from Cincinnati, we’ll send her files to Boston for a second opinion. If Boston is in agreement with Cincy, then we’ll
come back to Cincy for her next surgeries.
I’m guessing (I’m not a cardiothoracic surgeon, of course) that her
surgeries will have to be sooner rather than later. If the end diastolic pressure in her
ventricles has doubled over the past 2 months, who knows what it’ll do in the
next 2 months? We’ll keep you posted on
the surgical front.
And now we’re back to the saga of getting discharged. We were supposed to let Ellie recover from
her cath in CICU for about 24 hours, and go home from the CICU. Brandon and I both took off work on Thursday
in preparation for discharge. Everything
seemed to be in line for this to work perfectly. However, at 10:30am (an hour and a half
before the discharge time), the discharge coordinator came into our room with
bad news. The insurance company and the
nursing company had not come to an agreement on wages. Ugh! I
thought this was agreed upon a long time ago.
I made a call to my HR department to ask them how best to
deal with this. Then, Brandon made the
calls (like 10 total) to the insurance company to sternly talk with our care
manager and her supervisor about getting this resolved. By 1pm, we were transferred back out of CICU
into TCC because the CICU needed a bed and we no longer needed intensive
care. Finally, at 5pm, our care manager
with our insurance company called us back to tell us that my employer was
making concessions to bridge the gap in the wage battle between insurance and
nursing. Our care manager and her
supervisor were literally working on our case all day (we’re very thankful for
that). They had to present our case in
front of a board to decide if there was any way to get us home. Honestly, it costs our insurance company more
to keep us inpatient for 1 day than it costs to cover home nursing care for a
month. Seems like a no-brainer to
me. And, our insurance company and my
employer are owned by the same parent company.
I feel like they’d say, “get this family home, for the love of Pete… we’re
dipping into the same piggy bank here, folks”.
But that’s just me.
Long story short: we
did not go home yesterday. We’re hoping
that the fax (I know… 1980s tech here) went through to the nursing company and
that all is ready for us to embark homeward today. Last week we were waiting on a letter to
arrive by mail, this week, we’re waiting on a fax. Can we get the pony express involved here,
too? That would be amazing. Maybe a courier pigeon or two… yeah, I like
that. So before you ask, unless you see
pictures posted from home, we’re not there.
Better luck today, right?
Wrestling w/ her caterpillar back in TCC
P.S. I hate the word discharge... hate it... but when I talk about it daily, it's losing it's ickiness... good news, right?
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