I am going to try and describe what is going on as best I can for those
that have followed our story and supported us along the way. Basically,
another coarchtation occurred in Bryce's aorta. The previous coarc was
caused by the closing of the ductus arteriosis, a fetal shunt used to
bypass the lungs in utero. In his case, as is the most typical cause,
his ductus tissue had grown into the aorta and as the ductus closed, it
closed the descending portion of the aorta. They were able to remove
the portion with the stenosis by entering between his ribs, thus
avoiding bypass. Now it has occurred again, but in a different
location. That is very unusual. Between 10 and 20 percent of repaired
coarchtations manifest again, but typically later in life as the aorta
grows and the sutured area does not grow correspondingly. Another cause
of future recurrence would be the inflammation of the scar tissue. So
it was very unusual that it would have presented so quickly, just two
weeks after the removal of the offending portion. However, this area of
closing is further up the arch of the aorta, in closer proximity to the
connection to the heart than the previous and the cause is obviously
not associated with the closing of the ductus. So, there appears to be a
rather large area of Bryce's aorta constructed out of defective
tissue. Also, the manifestation of this problem when the left side of
his heart is normal and all valves on that side fully formed is also
unusual. All in all, it adds up to a peculiar phenomena.
The surgical repair will require the opening of his chest and placing
his heart on bypass and a full reconstruction of his arch, rather,
essentially eliminating his arch all together. In his case, they are
most likely to cut the descending aorta and close the aorta at the point
just past where the two last ascending branches fork off. This is
right as the arch begins its descent. They would more or less create a
cul de sac at this point and then move the descending aorta to the
frontal portion of the arch, near the connection to the heart, before
the ascending service branches fork off. This is an extensive
reconstruction and the elimination of the arch function has been
off-limits for a long period of time, but more recently has been adopted
as a proper therapeutic approach to various aggressive aortic
malformations. They have not determined that this will be the exact
nature of his proceedure, but the cardiologist said it is most likely
considering Bryce's anatomy.
There will also be more earnest discussions about opening the heart
while on bypass and attempting a tricuspid valve reconstruction. Bypass
is a last and desperate approach in premature babies because of the
serious risks of cerebral perfusion (brain damage). However, when a
baby has reached their term age at 37 weeks of life or greater (Bryce
will be at 38 weeks - 4 outside the womb - when the surgery is
undertaken), the risks of brain damage from bypass diminish to make it
much more acceptable in situations where it is needed. There are
competing schools of thought even in this institution about whether to
tackle the tricuspid issue this young when it is not essential. The
cardiologists would recommend putting it off as long as possible and
performing the procedure years down the road. However, the surgical
team, led by Moralas who will be performing this procedure, often
advocates a more aggressive approach. I think it all depends on how
quickly Moralas believes he can enter the heart and manipulate the valve
because the longer Bryce is on bypass, the greater the chance of brain
damage becomes. This decision has not been made and will not be made
until full conference on Tuesday morning. So what we know for sure now
is that Wednesday or Thursday they will perform surgery. We know his
chest will be open and he will be placed on bypass. We know that
regardless of how extensive the reconstruction is, his recovery will be
more difficult and he will remain intubated much longer this time. So,
right now, it looks like we will be here another two weeks best case
scenario. And yes I am on the wait list for a room at the RMH because
right now we are staying at a Hampton Inn in Covington, KY just across
the river from Cincinnati.
This has all been more emotionally taxing than all our previous hurdles,
at least for Nicole. When we arrived home and our family was united,
the relief, satisfaction and the feeling of safety and having finally
arrived was intense. We did not anticipate being torn apart again,
especially so soon. Nicole had just begun rebuilding her Mom's
connection to Eden who has come to see Peggers and Kelly as her primary
care providers (unless I am around). Yes, Eden remains a pretty staunch
Daddy's girl. It has been hard missing so much time with all of the
kids and so many pivotal moment in Eden's development. It has been hard
to accept that this will carry on a bit longer, further into the summer
and we are living here and there (because we cannot take River into the
CICU). She has broken down in tears more frequently since the
discovery of the issue from the echo in Chattanooga than during any
other stage of this journey. She desperately did not want to leave home
and family so soon and she was terrified at what unknown lay ahead for
our little Bryce. So, to mitigate the emotional difficulty, I may
return Nicole and River to Chattanooga tomorrow (Sunday) then come back
to Cincy alone on Monday. Nicole would then drive up in the van on
Wednesday afternoon with all of the kids and we would hopefully have
quarters at the RMH by that time. So our fight carries on and we are
still not in the clear but we remains even more trusting of our
perfectly loving Father than ever before. Yes we are broken. No we are
not made of iron. Yes our insecurities can manifest in obnoxious ways
at times and fear can play out in secondary emotions. And yes, at times
we want to escape or change the way we feel but nothing on this earth
offers a meaningful solution other than letting go, and walking in
faith, somewhat blind, with a significant limp, but walking forward
none-the-less.
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