Home 22q11.2 July 13th, 2021

July 13th, 2021

by Summerly Rowlands

Tuesday, 7/13

Our pediatrician referred us to Akron Children’s neurology floor due to Izzy’s seizures. We arrived to the hospital & went directly to admitting. We had packed a few things thinking we might be staying for a night or two……….

Neuro was the 7th floor. When we got to our room, which felt like a 2×2, we were met by a few nurses, one of which did our intake, and so the explaining of everything began… the constipation, the throwing up, the seizing.

Soon after, Izzy was hooked up to her first EEG.

An EEG is a test that detects electrical activity in your brain using small, metal discs (electrodes) attached to your scalp. It is one of the main diagnostic tests for epilepsy and can also help diagnose other brain disorders. An EEG is painless, but does seem to take a while to put on and set up, as it is a very tedious process. Each electrode is connected to a different color wire and placed in a specific spot with a special glue (that smells very, very strong). All of the electrodes are then covered in individual pieces of mesh which is held down by a liquid (reminded me of paper mache in middle school art class). There is a small tool that helps suction and dry each piece so that the electrode stays in place. The amount of time a person has to keep an EEG on depends on the situation. The brain wavelengths are read on a computer that is plugged in to the “wire box”.

Izzy had 24 electrodes connected to her for this procedure. For me to be able to hold her, they had to wrap her head in a netted stocking cap and then put the wire box in a small tote bag. However, even with me holding her, we couldn’t move around much because the computer had a camera set up with it that had to watch her at all times.

We were told that Izzy would be hooked up all night. When we met the first neurologist & his team, he actually said to us that it was very unlikely that what we were witnessing was actual seizures since Izzy was so young… and then they laid her on the bed for her initial assessment… and sure enough, parents were right, she seized. The neurologist was in awe.

We showed the staff the videos we took of Izzy’s seizures at home. They were all very appreciative that we had documented everything – they said that was extremely helpful. While watching one of the videos, our intake nurse pointed out that Izzy’s bottom lip was trembling in conjunction with her body twitches and eyes rolling back — we hadn’t even noticed that.

Sterling and I were told to press both the button connected to the EEG and the nurse call button whenever we saw Izzy having a seizure so that it could be recorded & they would know to come in.

Sterling took the nurse call button while I held Izzy in my arms and prepared to hit the EEG button. Once she had one seizure, it felt like she had a hundred. We were pressing these buttons NON.STOP.

Every time we pressed, the nursing staff would run in, they would time the seizure, and then they would leave & wait for the next. We were explicitly told not to try and stop the seizures by holding her hands or feet, that that would not be beneficial. Some seizures were 10 or 15 seconds long, others were almost 4 minutes from start to finish. It felt like the nursing staff should have just remained in our room for how frequently the seizures were occurring. And apparently there were even more seizures happening that weren’t visible to the eye – she was seizing while asleep and seizing solely in her brain without physical reaction. The neurologist seemed to became fascinated to the point of obsession with Izzy’s brain activity on the EEG. It was almost like he wanted to keep her ‘plugged in’ just so he could watch more of it.

Eventually, we were informed that what was happening was referred to as cluster seizing.

At one point, Izzy had 11 seizures in a 5 minute span.

And so the medications began. They put in an IV to deliver these – one medication for the clustering and another to try and maintain the seizures.

Izzy was also put on oxygen before the night was over because things weren’t going well. In addition to seizing, she was choking, crying from her constipation & upset stomach, and having difficulty breathing. This was the start of the haunting monitor beeps when her oxygen levels would drop. “Desats”, as it’s called, became all too familiar.

They also scheduled an MRI for tomorrow. This meant that Izzy needed to be NPO (nothing by mouth) starting at midnight. IV fluids only.

Maybe we might be staying more than “a night or two”………

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