It’s Wednesday evening, we’re looking at the forecast for the weekend and see that Sunday is going to be a lovely sunny day. Daisy’s had a cold early on in the week but is starting to seem back to her normal self. We decide to make the most of it and go for a family day out and enjoy some fresh air this weekend…cue a sizeable curve ball!!
The following evening (Thursday) we are getting Daisy ready for bed and she just doesn’t seem to be settling. She was dozing off and then waking herself up again, at times she seemed a bit out of it but she hadn’t slept much all day so we reassured ourselves that she was a bit overtired. By half past ten we saw the side of her mouth start to twitch and knew straight away that this wasn’t tired. We ran for the sats monitor so we could keep an eye on her heart rate and oxygen levels and then reluctantly reached for the Buccolam. By this time it was her whole face twitching and her arms too. We gave the rescue medication and just waited – half watching Daisy and half watching the clock. If the seizure hasn’t stopped 10 minutes after the Buccolam we are supposed to dial 999. Thankfully 9 minutes after the meds she began to settle and come round. We were so relieved. We decided to put her to bed but to sit up with her to make sure she was okay. Her heart rate had settled and her oxygen levels were okay so we were hopeful that she would get a good sleep and feel better in the morning. Unfortunately, at midnight the seizures returned. We can’t give another dose of Buccolam without dialling 999 first so we waited for the paramedics to arrive. It’s stupid because we only ever phone in a emergency but we get such guilt over phoning an ambulance. They are always reassuring, they tell us that anytime you phone an ambulance with a child like Daisy it wouldn’t be unnecessary, they tell us some of the truly ridiculous call outs they have received, but it still seems like a huge thing to do no matter how many times you do it. They administered Diazepam which had no affect at all so Daisy had to be blue lighted to hospital. It is always such a relief when you walk in to A&E and it’s nurses that know Daisy. By this time she had been having this seizure for nearly an hour so we were anxious that they acted as fast as they could. With advice from the neuro consultant, they began an infusion of Phenytoin. This lasted half an hour and, as the infusion went on, Daisy’s seizure became much much worse. She was shaking more violently than I have ever seen her and we were getting extremely worried. It can apparently have this reaction in children with brain injuries so at least we know to avoid this drug in future. She had had three different anti-convulsants by this stage and we were running out of options. The final drug they could give before we would need to be transferred to a different hospital is Phenobarbital. They gave the first dose and Daisy was still seizing. Further drugs can only be given at a hospital with a PICU because she would need assistance with her breathing. With the NWTS team on standby to move us, they began a second and final dose of Phenobarbital and to our relief the seizure stopped. It was over two and a half hours since the seizure had begun.
We were moved upstairs to the HDU on Rainbow Ward where they could monitor Daisy fully and ensure that the drugs didn’t have any impact on her breathing and that the seizures didn’t return. Due to the amount of drugs it had needed to bring the seizure under control, she was completely knocked out. We sat up with her and we’re so glad to see her still and settled after such a frighteningly prolonged seizure.They did all the usual tests to try to find the cause of the seizure but her bloods tests were fine and her X-ray was clear. In the early hours she began to spike a temperature and didn’t respond to paracetamol or ibuprofen but thankfully it came down a few hours later. The Dr felt that this temp was probably a reaction to the long seizure. She remained asleep for the majority of Friday and began to wriggle a bit and try to peep on Friday evening. She had been still for such a long time that her secretions had built up but she was almost too weak to do anything with them.She slept overnight with just a few coughs and suctions and began to wake up a little bit more on Saturday morning. Although she was groggy, the physio felt that her chest was clear and she just needed regular nebulisers and movement to clear all the secretions that had built up. The sputum sample had only grown pseudomonas (which it always does) and she hasn’t developed any further temperatures so it was just a case of giving her time for the drugs to wear off. We have everything we need at home – oxygen, nebulisers, suction and says monitors – so I asked about the chances of letting her recover at home where we could keep her away from further viruses and bugs. They agreed and we brought her home later on Saturday. We are watching her closely and making sure she’s gradually coming round but feel so much happier to be at home together. Hopefully normal service will resume shortly and Daisy can back to her fun and frolics!