Originally posted on Bella The BravePCDH19. Thank you Helen for letting us share a glimpse into your life. Please check out her Facebook page.
Things have shifted over the years. An unconscious change as I have grown in to the role of Specialist to all things Bella.
I remember bits and pieces from over the years but truth be told most of it is just a blur of beeping machines, flashing lights and lack of sleep.
The drs and nurses understand that after doing this almost weekly for 6 years for the most part I don’t want to engage in conversation. I will tell you what you need to know and that’s about it.
We are exhausted and would rather keep the curtains closed around the bed if possible.
Whilst the ‘newbies’ bounce around the wards living off adrenalin sharing their children’s stories with excitement I don’t.
Dramatic tales of 1day PICU visits and the diagnosis of each child.
If you ask I will tell you but not in detail and not often in fact never really these days.
Unless you already know Bella from the hospital throughout the years you properly won’t know what’s going on. Im not running around the hospital chatting about who’s got what and how ‘bad’ in order to get attention with the mums whilst my child is busy playing with others.
Even if I wanted to (which I don’t because I’m preoccupied trying to keep my child a live in the hospital!) I couldn’t because my child needs 100% of my attention and she won’t be running around the halls laughing and playing because my child is seriously too chronically ill to get up out of bed as well as having too many big seizures for me to even leave her bedside and I am exhausted.
It’s the same with drs.
I just haven’t got the energy and all they have to do is look at Bella to see things are not ok in that moment.
However I will remember the good drs and helpful parents as well as the bad ones too.
When Bella was a baby and all of this was new, before the chronic stress, exhaustion and the reality of the situation set in I was full of life. I was her cheerleader as well as advocate and Mumma. I wanted to teach professionals about how complex and misunderstood Bella was.
I welcomed medical students in. I thought I can help the drs of tomorrow truly understand and they may find her a cure! Of course there comes a point when you realise that your child is getting worse and you don’t want to see any more drs than you really need to. This reality came very quickly to us. Many years a go during ward rounds her neuro told the new grads that I was the expert in all things epilepsy and if they want to know any seizure types I am the parent to go too. I laughed then realised he was serious.
I remember years ago some dr came to see us & as Bella was seizing he held her arm tight, pinned it to the bed whilst the rest of her body thrashed about mid seizure & I slapped the drs arm away and tore strips off him. Once the seizure stopped I pointed my finger at him whilst I scalded him and gave him the speech about how he could of broken her arm and not to restrain during a seizure unless there was a safety issue and they absolutely needed too.
I thought why is it that all drs don’t know this basic stuff?
A different time a dr was with us when Bella start to seize.
I turned my back to him to deal with Bella’s seizure. She was thrashing about and her oxygen levels were dropping. I couldn’t keep the mask on her because she was moving around so much. I asked the dr to step up and hold the mask near her face whilst I timed, checked pupils and rubbed her hand to comfort her. The poor dr had never seen a real seizure and looked petrified.
He did everything I asked him to do and followed orders to a tee. As soon as he eased into the situation we looked at each other briefly and connected. He than began stroking Bella’s hair whilst he held back his tears and told her everything was going to be ok. He spoke softly to her as she seized. They were kind and reassuring words. There was no panic just calm but we could sense the very serious reality of the situation between us.
It was now close to 30 minutes into the seizure so I pressed the call button. Nursing staff rushed in and looked at us. ‘Midaz infusion now’ I barked and they looked at the dr who nodded. After all Bella had been doing this continuously for days.
That was the last I saw of him and didn’t give it another thought. That was until Friday night in emergency.
Bella was having a seizure.
This one had been going for maybe 40minutes by this point. A dr calmly smiled and said hello. He stood by her bed and helped with her seizure. Whilst we both monitored her seizure we talked briefly and calmly over her. A brief history and how long this seizure had been going for. I felt at ease with him there. The nursing staff rushed in and he briefly disappeared. A short time later after calling the neuro he came back with the continuous infusion ready to go. The seizure continued but we knew it would only be a matter of time before the infusion eased the seizure. The dr stayed and he stroked her hair and held her hand. Something felt familiar but I couldn’t put my finger on it. He spoke softly and reassuringly to Bella and to me in away that I had heard many years before.
He stayed past his shift until Bella came out of her seizure. He brought me a cup of tea a short while later. By this point it was obvious he knew Bella & I did recognise his face but that was all. I remarked how he had obviously done this before as he was so calm and had a remarkable bedside manner (I have seen some idiot drs in my time) We talked a little while. He said many years ago he met us and that I talked him calmly through his first ‘real’ seizure.
I don’t remember talking much nor what I said at all.
He told me he learnt then sometimes parents hold a wealth of knowledge that can not be taught in a journal.
We may never see this dr again and it was over 4 years since he first met Bella but he is one of the very few drs our family will always remember.