I woke up this morning convinced we were still looking at
the same scenario as we have been for the last 2 years: Wyatt causes his breath
holding episodes when he’s uncomfortable or frustrated and if he does it long
enough, seizures can follow. Well, based on what we found out today that may
only be partially true. All 5 previous EEGs done in the first 1 ½ years of his
life showed no seizure activity before, during or after breath holding episodes.
So in theory during that time frame our understanding of the cause of his
episodes seems correct. However, after yesterday’s long seizure activity (possibly
related to his bad cold), the current ongoing EEG showed 15 silent seizures,
meaning only visible on the EEG without physical signs, lasting 15-30 seconds
each. That then begs the question, what the hell happened between all his
previous tests and now? As usual, we don’t have an answer for that and can only
speculate. The priority right now is to start Wyatt on Keppra, an anti-seizure
medication, and continue to monitor him on the EEG to see if the Keppra is alleviating
the silent seizures. If so, it is recommended for him to be discharged with a
daily maintenance dose, to closely monitor for side effects of the medication and
developmental implications, and then to repeat the EEG in a few months. As if
that isn’t complicated enough since such observations are highly subjective and
mainly would fall on us at home, it doesn’t help that he has a cold which makes
it harder to distinguish between the normal red flags verses weird cold
symptoms for a ventilator dependent child. The Ativan given yesterday morning
to stop the long seizure in the ER should have worn off by now and he hasn’t
been given any other medication since then. However, he is very lethargic, more
so than he would normally be if we were at home and he was fighting a cold.
Yesterday’s blood work, as well as today’s didn’t show anything out of range to
blame it on. Since he doesn’t run a fever, another lovely side effect of having
an autonomic nervous system disorder, we can’t use that as a guide either. So
in my head, it’s either related to the exhausting day yesterday and the
intermittent seizure activity or, fingers crossed I’m wrong, pseudomonas has flared
up again. Either way, he’s definitely not like himself, not even in a having a
cold and feeling miserable kind of way. But let’s get back to the more puzzling
concern. How come all 5 previous EEGs didn’t indicate anything and now we’re
having a concert of events going on? The thoughts started to creep back into
our heads of what went wrong in June after Wyatt’s surgery. I didn’t write
about this then because I didn’t want to freak anyone out and quite frankly, I had
a hard time finding nice enough words to use. Short summary, the hospital staff
in the post-op area failed to hook Wyatt back up to his ventilator for over 30
minutes while he was recovering from anesthesia. For the ventilator-dependent
child I think it goes without saying that we are lucky he survived. With that
in mind though, how do we know what long term effect that could have on him? Given
today’s dilemma, how do we know or even address the possibility that the sudden
change in EEG results only two months after that hospital error may be related?
As inexcusable as that hospital error was, I am not out to point fingers now. Given
the lack of any other explanation though, it is something to consider. Then I
ask, how can we now scientifically pinpoint when the changes in Wyatt’s brain occurred
that caused seizure activity to begin, to either confirm or deny if the
hospital error is the cause? Even more important is the question of how to
bring up that conversation with the hospital staff without shutting doors since
that is a potential legal liability and negligence battle?
As always, more questions than answers and even more worries
and hurdles to overcome.
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