We are in this pattern of; she has seizures, we give her a meds to stop the seizures and it also puts her to sleep. Then as she wakes up, she starts having seizures again and we start the whole cycle over.
So yesterday ( Thur) starting at 3 pm she started having a seizure every 20-30 minutes. This was not enough to trigger the rescue med ( Ativan). To give the Ativan they typically wait for a single seizure to be over 15 min or a cluster of 3 or more seizures within 15 minutes.
But the hours ticked by and the seizures kept happening every 20-30 minutes. Around 7:30 pm I started
asking about maybe giving a rescue med. I wasn’t ready to pull the trigger, but wanted everyone to start
thinking about it.
At 8 pm she had a seizure and her monitor said asystole and her heart rate monitor was completely flat.
Her heart had stopped. Her heart restarted again on it’s own within about 4 seconds. But it was scary.
The nurse stayed in the room to check her vitals and see how she was doing. At 8:20 the same thing happened. The nurse grabbed her wrist and could not feel a pulse. Once again it only lasted about 4
seconds and her heart restarted on it’s own. This was even more scary because now her heart had stopped for 2 seizures in a row.
I said, let’s give the Ativan to stop the seizures and stop this from happening. The nurse agreed.
The nurse got the Ativan and tried giving it to her through her IV. Her IV wouldn’t flush. She worked at it for probably 5 minutes. She only had the 1 IV. We were approaching the 20 minute mark and I was
terrified that she was going to have another seizure and her heart would stop again.
We needed the IV to work. By the time they called the IV team up to put a new IV in it would be a long time later. I said a prayer in my head and heart for the IV to work just for this 1 med and then the IV
could go bad.
Within 1 minute the IV was working and the nurse gave the med. My prayer was answered. It was a
miracle.
She did not have any more seizures last night.
At 11:30 pm were told they were moving her to a new unit and new room where they could watch her heart more closely. So we were moved to the surgical unit at Midnight.
When we got to the new room we were pleasantly surprised with a new remodeled room that was HUGE. We love it. We actually have room for her wheelchair and bipap and vest machine and Baer hugger and
IV pole. We don’t have to play Tetris with the furniture just to get in the bathroom. It is probably 6 feet wider and it makes all the difference in the world.
She had one other heart incident last night. Her heart rate went to 45 for about 4 seconds and then jumped back up to 95. It was not during a seizure. Her heart rate will occasionally do this at home.
This morning she has had 3 seizures ( but no heart stopping thankfully). She is not awake yet, so we will see what happens when she wakes up.
We decided to up her daily dose of vimpat to 175 mg twice a day and to give her another loading IV dose of the vimpat to get her blood levels up.
The daily dose should take 4-5 days to start working, but the IV loading dose should kick in within a few hours.
Her blood cultures are negative, her viral panel is negative, her urine is negative. They are calling this ear infection and bacterial aspiration pneumonia. Her inflammatory blood markers are up and her temperature is unstable so they definitely think there is infection going on. Last night her temp was low, this morning it is high.
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