The Seizure

We nearly ‘lost’ Daya last week. It was terrifying.

She had a seizure at home in her bed whilst she was still asleep. We wouldn’t have checked on her for another hour or two and then we would have presumed she was asleep. By then…she’d be either brain damaged (diabetic coma) or gone. The important point is that….Daya isn’t a diabetic.

I woke up and went into her room at 6:30am as I wanted to have a quick look at her sleeping. I don’t normally do that. I don’t want to run the risk of waking her up as I creep in. Sometimes I think about how much she has been through and just watch her going about her day. On this morning, I just wanted to have a quick peek.

When I walked in, Anu was already there and watching Daya, He told me to ‘Shhhh….’. He wouldn’t normally be in there either. He had gone up to get Jasmine’s cochlear implants. After two years of charging downstairs overnight, I moved them upstairs the day before. I looked at Daya….. ‘She’s going back to slee….Shit. Fuck. No. She’s having a seizure. Get her up. Sit her up Now.’ I jumped on her bed and grabbed last night’s old milk bottle from the table. Her fingers were all at odd angles and stiff and her eyes kept moving forwards and backwards in and out and she was twitching and then stiff.

She’s never had a seizure at home. She had a major one in hospital due to sepsis and that, for hours, she wasn’t prescribed fluids or feed as requested.

I grabbed the old milk by the bed side table and calmly but firmly; DAYA. DAYA. Drink this. I put the straw in her mouth. DRINK THIS NOW. Please baby drink this. Drink. Hold her Head. Good girl. Please please drink this now. Please Daya.

999. Hello. Ambulance please.

My daughter is an oncology patient. She’s having a seizure. I think its sugars. This has happened before. Her BM is 1.3. She’s four years old.

Is she breathing. Is she responding…

Anu: Daya. We’ll need to do CPR if she goes any further.

Me: She’s not ok. She’s breathing but she’s having a seizure. Shes not responding. DAYA. DAYA. Drink this. Just a little bit. Hold her tight. (In my head… ‘dont die, please dont die on me..’)

Yes. I need someone. I can’t get enough of this milk in….Sort of …Ive got her to drink something barely but its not enough…..she’s not responding properly. NO. Shit….No…Daya…please send them now. I’m trying to give her milk. Please can you….I really need someone here I’ve got nothing else to give her. She’s passing out and barely responding. She can go stiff again.

There are on the way….stay with me. I need some more details.

It was horrible. I don’t know how we do it. I don’t know how this cat has so many lives. I don’t know how I stay so calm in an emergency. But this time I was terrified on the inside. The last time this happened we had our whole nursing team and a bunch of junior doctors (twice as many as it was hand over). The room was packed. They didn’t know what to do. Our Rainbow nurses at North Mid saved her life that day. Everyone else watched on. They were calm but scared too as Daya hasn’t ever done this before. Today I was scared too. And I had no medical support. She’s not a diabetic so I had no products to give her in an emergency.

Ambulance guy: Can you put this on your finger sweety?

Me: She’s 4 years old. She’s an oncology patient in remission. She’s had a seizure before due to sepsis. We couldn’t read her sugars they were zero that time. Her BM was 1.3 at 6.45 this morning. She’s had about 60ml of chocolate peadisure milk 1 calorie per ml. She’s had another 50 now. I suspect she’ll dive again quickly. That’s what happened last time. She’s got no central line or port. She’ll need a cannula. She may have an infection but she has no obvious coryzal symptoms. It’s either a UTI without symptoms or something else…I really don’t know. I’m Sorry. She’s going to plummet again quickly. She’s not had enough milk.

Ambulance guy: Are you a doctor? Well done, we’ll do a few checks and get her in. What’s her name?

Me quietly: ………….Daya……luckily she took the milk. We got it into her just in time….Daya it’s ok darling. You’re ok. These nice people are here to help us. Mummy needs a bit of help today. You’ll feel better soon.

More ambulance people: I need to ask you a few more questions……

We were sitting at the bottom of the stairs by now. I looked up and Anaya was right there, calmly sitting on the top step.

Me: It’s ok Anaya. Everything is ok. Everyone’s going to be just fine. Daya was just a little bit unwell. Anaya can you go and watch Jasmine and if she wakes up…keep her there and cuddle her until we go….I’ll try and be home later.

We had a two ambulance escort to the hospital. In the ambulance: Mummy this is what it was like when I was three. It’s going to be bumpy again.

Me: *silence*………..Yes. It’s ok now. We need a little bit of help today so they are going to take us to the hospital and we will see the nurses that looked after you when you were small.

When we got there we had to detail all the history all over again. It was our Local team that took care of us last week. Remember our nurses…..Kimona, Sadiya (who was there monitoring all night after the last seizure), Phylis, Diana, Magda…and some new people.

We were in for a few days. We are home now. She is feeling better. We are monitoring her sugars regularly. Next steps are an urgent review at GOSH with the appropriate team. This isn’t normal and wasn’t supposed to happen. It was terrifying. I could see myself waking up one morning and sitting on the floor holding her frail lifeless body and sobbing helplessly. She’d be gone while I was sleeping in the next room. I already know how easily they can die. So now my life has more additional child-health-management tasks and risks to manage . I stay calm but I am wholly drained. I remain wholly vulenrable. I hate it.

Jasmine and Anaya missed her. It was a one parent policy due to COVID. So one parent in the ambulance, in A&E and in the ward. This is to keep everyone safe. We are home and stable.

A special thank you to the London Ambulance Crew who looked after us and our North Mid A&E and Starlight teams.