Once again we find ourselves in the midst of a true crisis. The kind where you simply don't know if things will sort themselves out.
There are many different kinds of seizures, but the ones you fear the most are the brutal myoclonic tonic ones that ragdoll your kid with such a violence, that your heart breaks looking at it. When this happens despite all the medications, the CBD and the Cannabis, despite all the careful chest physio, despite the Fentanyl and analgesics, as though the hand of God grabbed your child by the scruff of his neck and went to town with a vengeance.
After one, your so glad it's over, you forgive everything and bask in the calm. But when it comes again and again, and again you become frantic. You give more THC but it is without effect. Then come the extra doses of Clonazepam. And again. And again. Still with no effect. You try Diastat. Finally, emotionally raw, shaking, you see some improvement. The seizures have stopped, after hours of hurt.
Now the differential diagnosis: is it a side effect of the opiates? Too much CBD? Pressure on the spinal nerves overloading his system yet again. These are important since a decision has to be made, what to do to stop the cycle.
It's time to move on to the next problem; 18 hours have passed and he hasn't passed any urine. You palpate and feel his distended bladder pressing against his abdomen. You press and massage, trying to wake him so that he can be aware of the pressure and maybe, just maybe he'll be able to relax the sphincter and pee.
It's two thirty in the morning and you've been working to stimulate his bladder for two and a half hours. But he won't react, even to pain stimulus. Oblivious, he lies on the couch bathed in sweat, your hands probing, cajoling, telling him ten thousand times, 'Segev you need to pee'.
Everyone is called, his sister and mother come over, to help and also make sure I'm thinking clearly. Everyone agrees this is all the result of a severe pneumonia. You bring him, with your own twisted and sprained back, to the bath chair and dowse him with warm and cool water. Still nothing. It's three thirty in the morning and finally he pees, nearly twenty four hours since the last time.
A sigh of relief. You continue the nebulizer therapy, the Inter Percussive Ventilation and the chest physio throughout. His oxygen saturation finally stabilizes. At four you climb into bed, the monitor beeping softly next to you and you fall asleep looking at your son's labored breathing an arm's span away.
Then at six O'clock the seizures start again. More diastat, more clonazepam. But you know it won't be enough. The seizures are no longer seperated by an hour or even a few minutes. He's spewing phlegm with each forced breath. The seizures, massive myoclonic-tonics, turn his lips blue despite the oxygen. They are continuous now, he can't catch his breath.
A phone call to the hospice physician means help is en route. Segev enters 'silent status', he's still seizing but you can't see it unless you know what signs to look for. Another hour before the doctor, out jogging when you caught him, will arrive.
Subcutaneous midazolam is injected and we wait. Another dose and another 8 minute wait to let it seep into his blood stream. Segev's eyes are moving a little less randomly, he is coming out of status. Antibiotics are administered. Hopefully the antibiotics will work. The twitching won't stop until his lungs start to clear over the course of a few days.The seizures, the worst we've seen in many years, should follow suit.