I am seated by Bryce’s side, now late at night. Myself, alone. My beautiful bride is back in our taxing room
with River and two other of our kids. I
hope she sleeps. I doubt it
frankly.
To be honest, she, and myself less, suffered more from this
last take-from-home surprise than all the previous jolts in our journey. We left so full, free, high even from our
early release …. From the truly remarkable strength of our little men. These little fighters who must know they are
already so loved, so wanted, so doted over, that they must know each of their
community and familial loves first hand.
They will fight through to see us all through it seems. For every response to a terrible situation
has been astounding. Yes, abnormal even.
Take the latest with our Bryce.
We came up following a BP cuff read and confirming echo which read the
difference in blood pressure from his arm to his leg at 50 points. His leg pulse was almost indiscernible. So he was transferred under medical
protection. When we arrived, I led the
EMS through the streets of Cincy and the process of entry in the emergency wing
and we were direct admitted to the room beside the one he inhabited after his
birth. That night, the difference read
the same. Things were dicey. How long
could his body tolerate such paltry blood supply to the lower portion before
his kidneys started shutting down and his legs changing color? Then the next day, things seemed to level
out. The difference as read by cuff
declined to 25, which shoved our case from operate now to operate very
soon. So stable was our boy, so normal
his GI functions that we were transferred Saturday to the floor, out of the
CICU. Here in this spacious room on
level six of the A building, his brother can actually sleep at the foot of his
crib with him and our kids have unlimited access to their brother. That makes it infinitely easier on us.
We had our meetings today, though not with Dr. Morales, the
chief of cardiovascular surgery who will perform the operation. In our consult with Dr. Cnota, from team of
cardiologists, we learned a good bit more.
He claims that in Dr. Michelfelder’s 22+ years of experience in
pediatric and fetal cardiology, he had never seen a coarchtation occur in a TTTS
twin. They have had a few valve anomalies
such as Bryce’s dysplastic tricuspid that manifest unresolved after the TTTS
laser correction, but never a case connecting to coarchtation. Furthermore, it is very rare for a
coarchation to occur in two different places around the aortic arch. Nonetheless, it appears that the narrowing in
his aortic arch has caused pressure to increase in his lungs because the left
ventricle is overworking to service the impeded lower organs thus increasing
pressure at or above the heart to hypertensic levels. This increase in pressure has applied
heightened pressure once again against the left ventricle (which pumps blood to
the lungs) causing the level or tricuspid regurgitation to increase to levels
measured just after delivery when resistance in the lungs was greatest. This is not alarming, and should most likely
resolve after the coarchation is removed, but the tricuspid continues to leak
vigorously either way. So now, fast
forward to the day of surgery.
Dr. Morales paid us a visit around 8 am to discuss his approach. Evidently, the team meeting yesterday had
many attending and was a rather lively debate with many attending cardiologists
as well as the surgeons. The meeting
adjourned and the plan was to open his chest, put Bryce on by-pass, and perform
the arch advancement with possible elective tackling of the dysplastic
tricuspid repair. However, Dr. Morales
spent the evening weighing all the input he had received and simply came to
tell us that he was going in, putting Bryce on by-pass and was going to fix
what needed to be fixed the best way to fix it.
He had not set agenda on how to pull that off. Furthermore, he had already determined NOT to
address the tricuspid issue, primarily for two reasons. One, if he attempts a repair, he circumvents
the bodies opportunity to possibly resolve the issue over time, on its
own. A natural repair is always a
preferred repair. And thought the leak
is not likely to ever stop short of intervention, it is possible it could slow
to the point that medication could sufficiently treat it. The other has to do with the physiology of
the valve material at this early age.
Evidently, reshaping a valve this early is far less likely to produce
the desired outcome because of how supple the material is. However, over the next 6 months or so, the
flesh in the valve alters and evolves and success in a repair effort becomes
much more probable. So, he thought the
risks of going back in were much less than the potential loss of either
preventing natural repair or insuring a greater chance of success in the repair
at a later date, as in, between his 8th and 12th month of
life. He was going to look at the valve
with an internal echo, but felt somewhat convicted to heed the counsel of the
cardiologists and resist the temptation to intervene so early.
Fast-forward once again to post-op consult at 5 pm. Bryce was taken from my arms outside the OR
at 9 AM, so this was an all day affair.
Morales said the procedure was very complicated. It was, in his words, difficult to perform
for several reasons. One, the
coarchtation was limited to one place, however, there had been substantial
thickening in the wall of the aortic arch over a large segment, essentially the
entire arch. Because of this, it made
not sense to perform the arch advancement where the descending portion is
attached frontally just above the heart and the descending line is cut off and
sewn into a basket. This because there
would still be the problem of the thickened wall and narrowed passage to the
ascending arteries, but also because his descending line was not plastic enough
to relocate to that extent. So, he had
to filet a long section of the arch and graft a patch over this portion
composed of Bryce’s own pericardium that roughly doubled the size of the aorta
in this area. The flesh of the artery
will grow over the patch in time. The
other complicating factor was the placement of the laryngeal nerve, which had
essentially braided itself, abnormally, around the aorta. This nerve had to be moved to complete the
reconstruction of the arch. In doing so,
it had to be stretched. That stretch may
have damaged the nerve with possible side effects of poor utilization of the
vocal cords for noise making and difficulty swallowing liquid without choking. He seemed genuinely concerned about these
possible side effects from the procedure but was not certain it would
occur. Furthermore, it is something that
can resolve in 2 to 3 months so long as the nerve was not inalterably damaged.
Finally, the team here is somewhat confounded by this
case. They have no idea what would have
caused the second coarchtation, again in an atypical location and disassociated
from the ductus. They also have no idea
what would have caused the aortic line to thicken as it had. Because of the nature of the repair, we are
very unlikely to have issues again with any of the troubled area which was
repaired, however, it remains a concern to Nicole and I that if this anomalous
narrowing and thickening could have occurred as it had, in various places as it
did, that it might happen again with another portion of the aorta or another
artery elsewhere in the body. Because it
was apparent that there was problematic tissue in this specific area, they
believe there is greater likelihood it is an isolated incident. But we will not know till time has proven
so.
Our petition for our youngest son is as follows:
1)
That there would be no damage to the nerve and
consequent complications associated with it.
2)
That this would in fact proof to be an isolated
incident attributable in part to defective tissue.
3)
That extensive inflation would not occur where
sutures were made or new flesh was attached because Bryce does not seem to
tolerate foreign intervention in his vessels well.
4)
That the tricuspid leak would wane to the point
where it is medically manageable and a reconstructive surgery will not be
required, at least until well into adulthood.
5)
Finally, that his recovery would clip along at
an acceptable rate, that he will take to eating once again, breathing normally
on his own, and that we might be discharged within 7-10 days.
Please forgive me at this point for drawing to a close at
the end of a rather dry presentation of medical data. I haven’t the mental or emotional reserves to
offer any personal reflection. I cannot
say we are dramatically relieved. We are
not high fiving. We do not feel in the
clear. We have never really been in the
clear and every time we think the end of the tunnel might be approaching, the
light turns out to be a train. So we
walk in faith, one step, one day at a time.
Doing what we can to make the most of our days, the most of our
relationships, the most of our struggle even, and doggedly clinging to a
complete trust in a plan we cannot know.
Too much celebration would be ill-advised. Too much foreboding would amount to
self-pity. So we pleasantly trust our
way through the unknown. And THANK YOU
each and every one of you that has said a prayer, spared a compassionate word
or thought, given support, and cared about our family. We are deeply grateful.
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