The final ‘episode’
Her 4th admission to hospital came just shy of 5 weeks later than the 3rd. It was pretty much the same situation; She was slightly happier on her meds, she still had a handful of ‘episodes’ a day and then suddenly she’d start having more and more until I panicked and called 111 for advice. I suppose I knew the minute that I started chatting to them that it was inevitable we would end up in hospital again but there was still a tiny part of me that thought they might have a magic solution we’d somehow missed or not tried before that would miraculously cure her.
Maybe once we got through the whole “is she struggling to breathe or bleeding from anywhere” stuff, we’d get to the “have you tried rubbing her in beetroot and dancing on one leg?” Sure, it would sound a bit rogue, but something we’d try nonetheless and then all of our prayers would be answered?!!
No prizes for guessing that we never got to beetroot. Apparently that’s not a thing. Instead, once I’d been through the key points of her medical history (which, by this point I had down to a succinct tee) their recommendation was to send local Paramedics around to check her out.
I agreed as Mark wasn’t home from work yet and I didn’t want to put her down to pack a bag or drive as she was very distressed and clearly struggling with the pain of her Reflux.
The ambulance pulled up outside shortly after I hung up, just as Mark was walking towards the house. Two male Paramedics followed him up the stairs and into our bedroom where I was standing, swaying with a momentarily calmer Dotty in my arms. They were kind and spoke softly, keeping their distance at first while I recounted what was happening. At their request, I lay her on the bed to be examined and right on cue, she had another ‘turn’.
They watched her intently as they let it play out and then one looked to the other and said, “It looks like a myoclonic seizure”.
I tentatively butted in; “Her Consultant has told us that this is related to Reflux and is a response to the pain…. but you think she’s having a seizure?”
He didn’t really answer, he turned the conversation to what they’d just seen and continued to ask us questions about her movements, the frequency and length of each ‘episode’ and her general temperament before and after she had them. They took her temperature and listened to her chest, continuing to chat to each other, dropping “seizure” in here or there which began to make me anxious.
We’d had this kind of conflicting chat with nurses before and it made me tense. My initial reaction was to feel annoyed at the confusion before switching to helplessness and worry. What if they’re right? What if it’s not Reflux? But she gets better with her meds…But she still has them even when she’s on her meds… But surely her Consultant would know?? I thought my head might explode at times and tears would trickle down my face but there was never much time to dwell on such things and I’d quickly snap back into soaking it all up to try and figure out our next move.
Dotty had another ‘turn’ or ‘seizure’ or whatever it bloody was and we were told that we’d need to be taken to hospital for further examination. Mark stayed back to gather our things and followed us in the car shortly after. I rode in the ambulance with Dotty sleeping on my chest, strapped on to a bed in the back with one of the paramedics sat opposite, chit-chatting to me on the way. He was nice and funny even, asking me about some Take That memorabilia (obvs) that he spotted in our hall. In truth, he was quite a dish and I remember thinking how I hoped Dot would one day get a kick out of the time she had Mummy ride (stop it!) in the back of an ambulance with that fit medic in a green jumpsuit as he sang “Back for Good” on the way to A&E. (I think it’s only fair I embellish the tale for her and my benefit). Oh how we’d laugh as Daddy rolled his eyes at incorrigible, randy, old Mummy. Pah! Maybe not.
You might thinking at this point “how can this hussy make light of such a thing.” – but please don’t judge. Truthfully, I’m just glad I was present enough to notice and recall what was happening rather than slipping back into the foggy and numb state that crept up on me at times, that made me feel detached to Dotty, other people or our situation. Humour can be a great mask and a convenient coping mechanism for handling heavy shit. It’s not for everyone but it helped me more than I realised and has given me strength on really hideous days like this one. I try to appreciate it when I can, as it’s often short-lived and followed by much harder emotions to deal with which inevitably take over.
It was raining when we arrived and I realised as I stepped out of the vehicle that I was wearing my slippers. Brilliant. I did my best to puddle hop across the car park (still holding my sleeping baby) but I was never any good at long jump and entered the hospital with splashed legs and soaking wet feet.
I said goodbye to our chaperone and was taken through to a bay to begin the rounds of observations and tests that the Nurses and Doctors would surely take.
While we waited to be seen I googled myoclonic seizure…
“During myoclonic seizures, a burst of electrical activity in the muscle control area of the brain cause a sudden jerk of the muscles in the arms, legs, neck or body. Seizures often happen just after waking, or when the person is tired before going to bed. There is a very short period of loss of consciousness, but it’s not noticeable because it is so short.
Myoclonic seizures usually involve both sides of the body at the same time, and the person may fall over.
Myoclonic seizures occur in a variety of epileptic syndromes, such as juvenile myoclonic epilepsy syndrome.”
I put down my phone with a new perspective on what was happening and was hell bent on chatting someone through my thoughts. But in hindsight, that’s happened (& continues to happen to this day) every time I read something new or remotely similar to what Dotty’s been through. It’s a leap each time in a desperate attempt to find answers in piecing together our puzzle. I’m often wrong but it doesn’t stop me.
This time in particular, felt like it applied to Dotty and made a lot of sense so I talked to the Paediatrician doing the rounds the next morning about it.
She humoured me for a while but was ultimately firm in refocusing me. She reminded me that as Dotty’s previous tests had all come back clear and as she’d begun to respond to the Reflux meds, we should continue with that course of treatment, as it was the most likely diagnosis. I honestly had no idea what to think but she was the professional and I was the panicked parent. I relented and questioned her instead about how to keep on top of the dosage of meds if that was what was causing Dot’s sudden relapse. She in turned asked me how much I was feeding Dotty and how often. She was growing quickly and was a hungry baby but over feeding her made her Reflux worse and I agreed that I could hear her milk swilling up and down her throat when she was really bad. She considered my response and then suggested I reduce the amount of milk I was giving her and increase the number of feeds, adopting a little and often approach so that she didn’t go hungry. Even so, the reality was that she was always hungry and had far less milk than was recommended for her age/weight because it just sent her sideways. I agonised over that daily but in my mind, I’d rather her a little hungry and cranky than having her ‘episodes’, screaming in pain.
Our conversation came to a close. Meds were increased and off we went home again hopeful that this time might be the last time we would come back to hospital. Beyond that, we tried not to think too far ahead – that type of nonsense only ever bit us in the bum. We’d grown cautious and were definitely more comfortable taking things day by day but this time was to be different. To our surprise and overwhelming relief, Dotty seemed to be getting better.
It didn’t happen immediately but over the next few weeks she had less and less of her ‘turns’ and we started to see a happier and more alert little girl emerge. She still looked like Verne Troyer, but that didn’t matter. She was our loved and precious mini me and that was ALL that mattered.
On 26th May 2014 I casually documented 2 ‘turns’ in one of my many notebooks. It was unimaginable to me on that day, as they’d become such a normal part of our daily routine, that these 2 ‘episodes’ would turn out to be her last ones.
As each ‘episode-free’ day passed and we got more and more confident that she was might just be over the worst, I started to relax and let myself think that maybe it WAS just nasty old Reflux after all.
Things were looking up and we were so very happy. It felt like our luck had turned and after surviving one almighty baptism of fire, we were finally on the right track having kicked Reflux’s arse.
We nailed it right? Now answer me this. Is life really ever that simple or that kind? In my experience, sadly, the answer would be no.
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