I hate to say it but our life now includes regular hospital stays and it’s not unusual anymore. I know so many nurses and doctors by name, I feel at home on the children’s ward.
Each stay has been different so far but there has been a recurring theme. It’s involved us experiencing a new level of stress, pain and fear. Just when you think you’ve experienced the worst, another comes along and hits you like a ton of bricks.
Today Violet was on the verge of intubation for a status epilepticus. In the last 24 hours she has had three clusters of seizures; 20 mins, then 70 mins and the final was 120 mins long. Terrifying does not quite describe the absolute horror of watching your little one receive medication after medication without effect.
We are praying that she is now on the mend from this episode but our epilepsy journey has only really just begun. Violets first cluster of seizures was in Jan 2017, since then she has had four petit meal seizures which only ever lasted as long as 12 minutes.
We don’t know for sure what has caused these seizures to be triggered. She has a high temperature, a suspected viral infection and low blood sugars. Combined it probably has been the catalyst.
Will this happen every time she has an infection or temperature? Will she have more frequent and worsening seizures? It’s so scary not knowing what the future holds.
Epilepsy was there on Vs list of diagnosis’s but has never really been a big issue until now. Seizures were short, few and far between. This has brought home how that can quickly change and how frightening it really is.