Fits and starts

Joshua woke up lively yesterday and came downstairs at 6.45, with no apparent side effects from his seizures or his  dose of rescue medication, much to my relief. He was pleased to see me and Yorkshire Grandma and was full of beans, so he had breakfast as usual and I got him dressed for school. Although I sent him off for school, with a note in his diary to explain what had gone on, I still had an uneasy sense of anxiety all day at work that I may be called by school at any moment to hear about more seizure activity. I jumped each time the phone rang and I was never far from my mobile, just in case they needed me to leap in my car.

The worst calls that we have had in the past are when the emergency medication has been given,but when it has not worked and so an ambulance has been called. That is a terrifying call to receive and on several occasions we have had to meet Joshua already at A&E and then, even through his post-seizure, drugged-up state, the relief on his face to see us,his parents among a sea of strangers’ faces, is visible. That must be a bewildering time anyway, coming round from a daze, to find yourself in a hospital bed, would be terrifying. The trouble is that at A&E, the doctors do not know Joshua or his epilepsy, and so they are working blind. In trying to establish if he has recovered sufficiently well to discharge him, the medical staff ask him questions that he could not answer on a good day, let alone post-seizure. In the end, they tend to ask us, as his parents, if he has returned to normal, normal for Joshua that is.

This will be yet another thing that will change after March, he will be classed as an adult and so will no longer go to the relatively pleasant environment of Children’s A&E, he will have to fight his corner with other adults. I was told that once he was 18, there would be no provision to  stay overnight with Joshua in hospital, should he be admitted onto a ward. I will have to fight that battle if it comes to it, but even as an adult, Joshua would need a chaperone , someone with him to be his voice and someone there to keep him safe too. I suspect the nurses would be begging us to stay with him to try to keep him in bed, to reassure him and to take care of his needs. Joshua would not be the first adult with learning disabilities to require a hospital bed, so there must be precedents.

But thankfully, on this occasion, the emergency medication did its job and there was no re occurrence of the night before’s seizures and he has promised me that he will also try to keep them at bay this weekend while he is away, in respite.

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Back home!

I was in hospital almost exactly 24 hours with Joshua and I rated that hospital very highly, as we have, sadly, had several others to compare it with from a children’s inpatient perspective:

  • Most importantly, the staff that we had contact with were all very pleasant and friendly. They all responded with a smile when Joshua told them that ‘I like you!’ and they seemed happy for him to point at them, stroke their hair – occasionally – and by the time we were leaving, charge up and down the corridor. I was never made to feel as though we were a nuisance, as you so often can in hospitals, as though patients are an inconvenience!
  • Joshua was prescribed intraveneous antibiotics every 8 hours, to beat the infection that  they suspected was casuing his extreme temperature rise, and it happened like clockwork, even the 2.30 am dose yesterday. The Doctors’ round was before 9am and he seemed very pragmatic and full of common sense and he was happy to discharge us at that point, without any prevarication, so we knew the plan from the start of the day, even though we were not leaving until much later, but it meant we were not left wondering as you so often are, craving information and decision-making.
  • My husband had the trauma of the noisy A&E and the children’s observation ward, where there were lots of babies screaming in pain. But I was lucky enough to arrive as he was moved to a calm, spacious ‘teenagers’ ward with just one other patient in there. So we were able to spread out into next door’s cubicle too and it was quiet, in fact once he started to feel better, Joshua was the noisiest in there. So I was able to sleep reasonably well, which can often be a problem on childrens wards, on my camp bed next to his bed and Joshua slept for almost 11 hours! He bearly woke for his 2.30 IV drip, whereas I woke with a start as the nurse shown her torch in my eyes, and I was not sure where I was!
  • There were good facilities on the ward for patients who were getting better and were mobile – there was a babies’ playroom, one for over 8s and another for teenagers we found. Joshua watched music videos in there and sat at the computer provided, then lay on the settee for a nap. We had it to ourselves but it was great to have an alternative place to go, once he got stir-crazy in his bed.
  • There were also good facilities for parents staying on the ward : I had two lovely showers during my stay and there was a parents’ room where I could make a hot drink to take back onto the ward with me. I had a camp bed , all made up for me, so there was no need to sleep upright in an armchair. All of  these facilities make a huge difference to those of us who stay overnight with our poorly children.

It is not a good thing to necessarily have a ‘favourite hospital’ but I can certainly recognise a good one when I see it.  At fleeting moments during my stay, it crossed my mind, how would we have coped if this incident had happened in 6 months time when Joshua is an adult as I am pretty ceratin that there is not the same provision for us both then. But for now, let me push that worry to one side and focus on the here and now, as we are all three of us at home, where we all belong.