Wyatt’s stoma reconstruction surgery is scheduled for July
12th and will require a 3-5 days post-op hospital stay.
The enlarged skin growth visible in the picture was caused
by a suture that cut his skin when he had his tracheotomy placed in July of
last year. That tear in his skin created a larger than intended stoma meaning
there is an extra opening behind that skin growth. ENT refers to it as a panhandle
shaped stoma. In other words, a normal stoma is supposed to be round but Wyatt
has a figure 8 stoma. During the reconstruction, they will ventilate Wyatt via
intubation to get a clear view of the stoma. They will try to save as much of
the good tissue as possible but will remove the excess skin growths and tighten
up the stoma to make it round. The expected post-op procedures and discomfort
level will be equal to having a new tracheotomy. Sedation will most likely be
necessary for a few days post-op to prevent numerous cyanotic breath holding
episodes caused by discomfort.
While we certainly don’t want to put Wyatt through another
surgery, the enlarged stoma has only gotten bigger as he’s been growing. The
air leak is getting worse making it impossible to know how well ventilated he
truly is because we can’t be certain how accurate his daily reading are,
especially his CO2 readings. The skin growth has gotten bigger over time as
well and is often irritated. He has also been decannulating more frequently doing
simple things like moving his head or coughing. We were giving it time to let
him get bigger and more resilient but it’s simply not safe anymore and needs to
be fixed. Our hope is that after the recovery period is over, he will be a lot
more comfortable and we will be able to assess his ventilation more accurately.
Once the air leak around his stoma has been minimized, he should be able to
vocalize more again as well like he used to – fingers crossed.
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