Five Year Anniversary

Today is the five year anniversary of one of the toughest days of my life : on 4 March 2014, Joshua underwent brain surgery – a hemispherectomy – at Great Ormond Street and at this time 5 years ago, our small family was sitting in the ward waiting to be taken down to the operating theatre. We had stayed the night before at GOSH ‘patient hotel’ across the street and we had taken him out to Pizza Express for his favourite lasagne as his last meal before nil by mouth.

Joshua was the first of the cases to be taken downstairs and we signed consent for his surgery and anesthesia. I always find the speed at which intravenous anesthetic takes to take effect. It is almost instant – you are holding the hand of a lively but scared child and then in a blink, you lose him, he goes floppy and inert.  He was taken into the operating theatre and we were told to go away and amuse ourselves for the morning, but were advised not to sit in the waiting room for the whole time. So my husband and I went to a cafe for a coffee, neither of us felt like eating. Then we decided to hire bicycles and to cycle to Covent Garden as a distraction. The busy city centre traffic was certainly a distraction! Once we got there, we bought Joshua a monkey cushion as a present and we had a pancake as it was Shrove Tuesday that year.

Then we could stay away no longer, continually checking our phones for news, so we cycled back to the hospital and chose to wait on site. Then the news came that he was out of surgery, all had gone well and he was in recovery and we could go and see him. He was understandably still very drowsy and  was bandaged up, connected to tubes drains and monitors, but our son had survived the surgery. He was alive and next we wanted to hear his voice or see a sign that he was still the same boy, despite having had massive trauma to his already-injured brain, but we had to be more patient for that sign, but of course it came. The relief and the love that we felt for Joshua that day was immense. We had made a choice for him, to try to improve his life in the longer term, and that was a huge responsibility. But at this stage, we were so happy that Joshua was going to see his 13th birthday, the day after, and that the long agonising wait was finally over.

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Testing Times

I left work early yesterday and picked Joshua up from school, as he had to have a blood test at hospital to check whether or not he still has his chest infection – I am secretly hoping that he is still unwell, as that would explain his recent bad run of seizures. So I went into sixth form 30 minutes before home-time and received a raucous welcome from Joshua. He leapt into my arms, told two TAs that he liked them and then ran for the door to come away with me. Once through the two security locked double-doors, he ran to the lift – clearly knowing where he was going and he happily got into the car. But once we turned right towards the hospital, rather than left towards home, he went quieter in the car, aware that something unexpected was happening and he became suspicious.

Joshua cheered up again once we parked up at hospital and walked into outpatients, where he sat beautifully waiting for his turn – with none of the antics that he had displayed last Friday! He sat surveying the other children and parents who were waiting. At one point his consultant neurologist walked passed us and hesitated – I think that she might have been panicking that she had forgotten that she was seeing Joshua! I put her out of her misery and told her that we were there for a follow up blood test and she looked relieved. She then asked Joshua if he was felling better now and he shook his head violently, which made me laugh.

Soon afterwards we were called in by the phlebotomist, and Joshua was not keen. He knew what was going to happen – for one of his anti-epileptic drugs he used to have have regular blood tests to check his levels of phenytoin so he was familiar with the room and the procedure. He tried to fix his feet or to sit down in the corridor, so that it took two of us to jolly him along and into the treatment room. Once inside, he was happy enough, waving at the nurses and showing them his veins in his arms. Two of us held him still while they took a very small sample of blood from his arm and he hardly flinched nor bled and we were allowed home, it was over in a  jiffy. Again, Joshua was delighted to skip to the waiting car and head home, thinking that he had got off lightly I suspect. Once he was delivered home, I turned around to go back to school for a Governors Meeting, so it was another busy day and I headed home for the second time at 8.30pm. Joshua had just got into bed when I arrived back, so I gave him a good night kiss, so that he knew that I was back home.

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.

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.