Chiane after seizures
Good morning everyone.
Yesterday was surreal. I got up with the kids around 6:30 am and Chiane was her old self as usual. She was full of energy, chirpy, chatty, laughing and she wanted to do some art and craft play. I made breakfast for them. After breakfast Chiane was doing some art work and she was 100% fine. No fevers, no sign of feeling sick. It all changed just after 10:45 am. Chiane got up and she was very quiet, I asked her if she was ok and she just ignored me which was unusual…and walked past me. 2 minutes later Andia and I started asking her questions and she would look at us, but not answer us. She looked very “calm” and “emotionless”. I put my finger in her hand and ask her to squeeze my finger… She look at me as if she wants to respond but can’t. I then talked firmly asking her again to squeeze my finger.. I watched her hand and realized she is “trying to” but couldn’t. Immediately I knew….”seizure”… She is about to get a seizure attack. From that moment onwards we moved fast. We were still in our slippers and sleeping clothes. From the moment that I realized Chiane was about to have a seizure to the point that I walked in to A&E with her was under 5 minutes (still dressed in slippers and sleeping clothes may I add!) I think Michael Schumacher would have been very proud of me! As I drove I watched her in my mirror and asked her if she can hear me, to blink twice. She did… I kept talking to her, explaining to her what is going on and not to be scared or worry.
Chiane could not talk, she could not move. I look into her eyes and I can see my child in there, but her brain and body is detached from each other. I could see she was trying to talk or move but she couldn’t. The hospital moved fast. She was on a drip in a few minutes. Her blood pressure was high, her heart rate 146 (it’s usually about 106). Oxygen level in her blood was 87% (that’s low!). I asked the doctors if she was having a seizure but they were not sure as some signs were pointing towards a seizure and some not. Chiane got oxygen and within a minute her oxygen level was 100% in her blood again. Her eyes pulled to the right and upwards. From that moment onwards, her eyes stayed in that position. I positioned myself so she could see me and I continued to talk to her telling her not to worry, that she will be ok. She then lost control over her swallowing and her saliva was just running out and down her mouth.
She then got her first seizure attack and everyone knew it. It was hard for me to watch what was unfolding in front of me. I was holding her hand and her body started “pulling tight”, she then started shaking.
I stepped back and left the medical team do their job. There were about 8 people around her bed and I stood and watched how she lost control over her body. I stood where she could see me, and her eyes were open but I could not see Chiane anymore in her eyes. There was nothing…her right side of her body was shaking (face, arm and leg). They started injecting Chiane with seizure medication. From the moment that we realized at home she is about to have a seizure attack, to the moment she had her first attack in hospital, was 16 minutes. This was Chiane after her first seizure attack. (I want to add that she was awake here… Not sleeping…)
She had another 2 seizure attacks, all lasting about 2 minutes, and 5 minutes apart. There are 6 “steps” of different medications they administrate to stop seizure… They start with the first one and then everyone stands back and watches if it’s working. It didn’t. They then tried medication 2 and 3… She had her 2nd, they then tried medication 4 and 5, and she her 3rd seizure… It took about 30 minutes then for her 4th seizure to hit her. They gave her medication 6 and put her to sleep (general anesthetics). If a person sleeps he or she can’t have a seizure attack and it was clear the medications didn’t work. They were concerned about brain damage, thus the reason why the put her to sleep. Now that she was sleeping everyone took a breather to think for a minute. She went for a CT scan. The Scan showed no swelling on the brain, no blood, and nothing that stood out.
Great Ormond street took over. An ICU ambulance was sent to our local hospital and they arrived at 5 pm to collect Chiane. It took them an our to prep Chiane and all the machines in to the ambulance. She was transported to GOSH and we arrived there at 6:45 pm.
Andia and I waited in the parents room to give them space to do what they had to do. It took about 45 min to get Chiane off all the machines and on to the hospitals machines. Oncology and neurology came to speak to us and told us they can’t see anything on the CT scans that could have caused it. We had a lot of questions but they could not really answer them. The plan now was to start reducing the work of the machines. Chiane could not breath earlier in the day and was put on a breathing machine. The idea was to slowly reduce the work of the machine and get her body to do the work itself. The machine did 80% work, her body 20%. They wanted her body to do 80% of the work. Then it was time to wake her up slowly over a cause of 2-3 hours reducing the drugs to see if she gets another seizure when she woke up.
1. they can do an MRI
2. and Chiane is awake.
There are 2 things that can cause damage during a seizure attack:
1. The duration of the seizures
2. The oxygen level in the brain when someone has a seizure attack.
They were hopeful that she will be ok, because she was on oxygen every time at our local hospital while she had a seizure and they lasted for about 2 minutes. If we didn’t act fast, and we didn’t realise she was about to have a seizure at home, and she had it at home with a oxygen level of 87%… It could have been a different story all together. The specialists were hopeful. The main focus now was to get her awake, and find the cause of the seizure. By 5 am Chiane was off all the machines, breathing on her own. By 6 am she was awake.
She is still a little disorientated this morning, the thought structure and thought process is all over the place. The good news is, she is very demanding this morning, she had breakfast and she ate herself. She started drinking and we are now waiting to hear when she will have an MRI.
We will update you all early evening once we have a better understanding of what caused it and we have more answers.
Thank you everyone for your prayers, positive thoughts and support.