I simply cannot believe how much can happen in one day at a hospital. The boy across from Segev has a bleeding tracheotomy. They scheduled a procedure for him on monday, meaning he has to be one week in hospital, out of his regular environment waiting for the laser surgery. Today a nurse did suction and he started bleeding profusely. When I left Segev now, it was still bleeding, his father frantic, alone all day and night despite having family.
He seems desperate and close to the edge, nervous. Exhausted he collapses next to his son on the hospital bed and I woke him because his boy was having a seizure. He went out for five minutes and again the boy was seizing, having trouble breathing. Nurses no where and the anguish on his face when i told him what had happened in his absence. Family comes for a quick visit of twenty minutes and again he is left alone. I overheard his conversation with a doctor on the phone: I'll give you twenty five thousand. In cash, and another twenty five thousand later. In cash, if you'll sign the medical affidavit.
He is apparently trying to get compensation for the atrocity perpetrated on his son.
Segev was seizing every four minutes. You can set your watch by it. 120 seizures resulting in a complete cessation of breathing every twelve hours.
I had a discussion finally with the neurologist. "I'm not certain that that's a seizure" she said to me. Every four minutes his shoulder starts jumping, then his arm, then he sticks his tongue out more than is humanly possible, yet the tongue is limp and thick as you try and push it back in between his teeth so that you can push upwards on his jaw so that towards the end of the seizure he begins breathing a few seconds earlier from correcting the spasm that closes his throat and turns him back from a dark purple to pink but she thinks it's not a seizure, every four minutes FOR 36 HOURS.
But I keep my wits about me and go at length into an explanation of the massive history of Segev.
"Yes but when were those video eeg's done?" She asks.
"I want to increase his keppra further" she says. "Is this going to help the status" I ask, stating that I haven't read any research connecting the use of keppra with status epilepticus. Doesn't the dosage max out at 1800 for Segev's weight? I ask.
"We have children on a lot of keppra", she answers.
I really have to control myself not to fill this writing with an expletive every other word.
Now, at 11.00 this morning Segev's seizures appear to have stopped and I say appeared with some emphasis since he is very heavily sedated so what was once a massive seizure now has the appearance of a small twitch. The point being if you can recognize that twitch it means the process causing him to be in status is still present.
Every hour there is a problem. One medication (steroids) runs quickly in the iv, displacing the sedating drug. The nurse wants to stop the sedating drug to let the steroids finish. I veto this and say we can't stop the sedation after having finally gained some seizure free time and start all over again if he begins seizing again.
But it doesn't matter since the counterflow from the steroid stopped the sedation from entering Segev's vein at the proper rate and he begins waking up. I look at the flow rate and it shows movement. But then I look at the infused amount and I see that it has been showing the same for about an hour and a half!
Segev is stretching and yawning like he is coming out of an afternoon nap.
The seizure free period comes to an end at ten in the evening.
He hasn't had a bowel movement in three days and I remind you that the surgical constriction of his stomach to prevent vomiting became undone, so the threat of vomiting from intestinal pressure, even from gas is a daily occurrence when he is healthy, never mind now. The physicians reaction: "Well, did he vomit today?"
He is no longer in ketosis. I work to try and get him to have a bowel movement to no avail. He gets a catheter since he no longer passes urine freely.
I ask for something prescription to help him defecate because even after minuscule feeding three days is too long. "Perhaps we will wait until the morning to see if it can happen naturally" is the doctor's advice. I'll give you natural. I'm a frickin' naturopath lady!
Here's a child with severe multiple neurological deficits even affecting the autonomic nervous system, completely sedated where having a bowel movement requires some cooperation on his part. How will he 'naturally' empty his bowels? Reverse osmosis perhaps? Their drug of choice has lactose and sugar in it (osmolarity), while I'm trying to get my lactose intolerant son back into ketosis which demands an absence of carbohydrates.
I'm sorry for this jumble of loose update scraps. I am tired and upset and need to get some sleep. Tomorrow morning will be better. Segev will make it through, he must. Despite everything I am thinking of others as well, those I know who go through hardships, via their blog and am humbled by the wave of suffering I see in the hospital each day.