Additional Needs
Why we need the Special Olympics
by Jodi Shenal
on 3rd May, 2024
Hospital stays
We’ve had multiple hospital admissions with our eight year old daughter, who was diagnosed with epilepsy at 18 months. She has a complex epilepsy that is very hard to treat. Some stays have been terrifying, some funny (I’ll explain) and some have now become almost run of the mill.
Our first stay was during her diagnosis. As our little room filled with people, we were terrified. She was confirmed to be having seizures. Tests were ordered for a wide range of conditions (I still don’t know what they all were) but we were soon facing the reality that life was unlikely to follow the path we imagined.
Those stays would be the first of many for us
We arrived by ambulance for some subsequent ones, with prolonged seizures. Some stays were for investigations to see if she was a candidate for surgery, some were for the surgery itself (she has a Vagus Nerve Stimulator).
Other more recent ones have been for non-convulsive status epilepticus. Recently we were ambulanced to hospital with a prolonged seizure. By the time we got on to the high dependency unit, she’d had a quick sleep, leapt out of bed and was signing ‘home’.
The nurse told me it was the first time she’d ever admitted someone on to the ward and then discharged them, all while covering someone else’s break (that was the funny one).
So, some tips for hospital stays. This is what works for me:
1. Say thank you and be nice to people (it’s ok to get inwardly irritated by professionals though, they are humans, and I have done my fair share of private eye rolling when things have been said less than sensitively)
2. Get your support network in place, if you are lucky enough to have friends and / or family offering help, say yes. Tell them what you need (I normally go for food).
3. Don’t be afraid to ask the nurses questions; is there a playroom? is there somewhere I can make tea? Often the nurses are too busy to brief you in when you arrive.
4. Take in home comforts – your fave tea, chocolate, blanket, whatever makes you feel better. Headphones are good for podcasts if your child is sleeping a lot.
5. Take comfy clothes – I go for leggings or joggers and often bring slippers to pad around in.
Although our stays have been frightening at times, I have, for much of them, felt comforted. I will end by sharing one exceptional act of kindness that I experienced when we were in last week for four nights.
A nurse overheard me on the phone to my husband asking him to send in some 85% chocolate. Shortly after the call she appeared with two mini bars, 75% and 85% saying “I couldn’t catch if you wanted 75% or 85%”, offering them both to me. I could have cried. That chocolate tasted so good.
