More seizures

In my speech for the gala I wrote "Layla has been so stable lately. It can sometimes slip our minds that the reality is we don't know what her future holds." Then the past few days happened. It's been rough, emotional, scary, exhausting..
On Monday night we came home from a wonderful meet up with a family from the states who has a child with the same diagnosis as Layla PCH2d, she even has the same genetic abnormality. It was pretty interesting to compare so many similarities of our girls. We noticed that Lay was pretty sleepy for most of the visit but she seemed okay, she has these type of days every so often. We put her to bed at 1030pm and she passed out right away. At 1130pm the video monitor went off and I heard a strange noise coming from her room so I ran in to find her seeming to be choking. I felt her hand and it was freezing cold, though her head was sweaty and hot. Her temperature was 38 degrees which is a fever. Her mouth was opening and closing consistently and involuntarily, chest was having convulsions, her eyes and limbs were very tight and I couldn't get her to relax. I called Aaron in and said - "Get Canuck Place on the phone Layla is having a seizure." It looked quite different from her grand mal last April. The nurse talked us through it. We gave her tylenol and Aaron starting drawing her rescue medication. By the time he had it ready to go she had slightly relaxed. This was after seizing for 15 minutes. The nurse advised not to give it if she was coming out of it on her own. I wasn't convinced that she was done so we decided to drive in to the Abbotsford hospital emergency department.
They took her in right away and placed her in a trauma room. A chest x-ray, blood work and urine sample came back clear. By 430am I saw her limbs jump up a couple times and felt her hands which were cold again. The nurse advised the doctor. Maybe 15 minutes went by and she was in another grand mal seizure. This time she brought her hands up tight to her face and eyes were wide open and rolling. Then she started choking and frothing from the mouth. Sats dropped. We turned her on her side and suctioned while giving oxygen. The nursing staff gave her rescue med and it didn't stop the seizure. They tried another that was still unsuccessful. On a good day it's hard to find a vein on her for blood work or an IV but they needed to get one to get her out of this seizure. After more than 5 attempts the doctor said "I'm going to have to do an IO"... What is that!? I thought.
Intraosseous infusion (IO) is the process of injecting directly into the marrow of a bone. This provides a non-collapsible entry point into the systemic venous system. This technique is used to provide fluids and medication when intravenous access is not available or not feasible.
They were going to drill into her bone... the thought made me sick but we were on board to do whatever possible to get her back. Right before the doctor started to drill, his phone rang and he stepped out. One of the seven nurses around asked if he could make an attempt on her ankle. He got a vein! Thank goodness. They ran another med through an IV and she came out of the seizure within 5-10 minutes. Thank goodness. This seizure had lasted 27 minutes. The medications are sedatives so she went into a deep sleep for about 5 hours. After the grand mal seizure last April Layla slept for something insane like 14 hours straight. We'd never seen her sleep that long in her life. I assumed that would happen again this time so Aaron went home to sleep and then in to work for a few hours. 
By mid day she had another seizure. Her body convulsed and she started frothing again. Suction and oxygen again helped. She came out within 2 minutes this time. 5 minutes passed and she had another 2 minute one. Within 30 minutes there was 5 seizures. The doctor came in and said that he was going to get her transferred to BC Children's. She had a 5 more short seizures and then an hour passed and she was brought into the ambulance to be transferred. 
Once there, in emerge that night she had maybe 10 more cluster seizures (not lasting more than 3 minutes). Then she was admitted to clinical teaching unit. She seemed calm and asleep. The nausea from my own exhaustion was taking over. Aaron offered to stay by her side and for me to go get some sleep. Between 10:00pm and 1:00am she had about 10 more. We lost count of the total. The docs were saying they would only give her the rescue medication if she had one lasting more than 5 minutes which these ones never did. As of 1am Aaron was completely drained- he had been doing all of the suctioning and giving her oxygen himself because it takes so long for the nurses to come and get gowned up when you press the call button. He advocated that they couldn't just keep letting her seize all day and night. They agreed to give her a rescue med. Thankfully it worked the first try this time and she passed out again.
The rest of Wednesday she didn't have any major seizures. She was very lethargic but that's to be expected. Her body worked so hard for over 24 hours. Since she was asleep and sats were good Aaron and I went to a hotel to get some sleep Wednesday night. She has stayed grand mal free since these events. Every couple hours we are seeing her be more and more back to herself. When they took some blood work yesterday and I saw her cry, I was so thankful. She hadn't been reacting to any pain before this which scared me.
A week ago, Thursday to Friday, Layla had a 24 hour eeg to see if there has been some unrecognized seizure activity. What timing. The Neurologist team is trying to get the results early from that to see if there is any helpful information. Basically they were trying to figure out if this whole experience was because of a virus or something to do with the progression of her disease. They were pushing for it to be a virus because that can explain the lowering of her seizure threshold. A swab came back positive to coronavirus and the strep virus. So the moral of the story is that Layla got what would be a common cold to most of us and it caused her to have all these seizures. So disheartening. Unfortunately this is going to make us be even more paranoid about her being around anyone that is at all sick.
Yesterday I was getting annoyed that we weren't getting more answers so I called Canuck Place to chat with a doctor about what to do. Two Canuck Place doctors came by to talk in person. They assured me they would talk to neurology and make sure we get questions answered before we are discharged. My biggest fear is that her at home rescue medication didn't work to bring her out of the grand mal seizure- even being in the hospital. How can I go home without having a different one? If we're at home without options we may not be able to get her out of the seizure. Once this is answered than we should be good to head back home. Fingers crossed that will be this afternoon.
Thanks to anyone that has been praying and sending good thoughts our way. And as always thanks for love and support. This girl is a fighter.

Still smiling, in the pain.