Patience is a Virtue as a Patient

We all wear different hats for the various roles that we play in our lives; my biggest hat is being Joshua’s mum and that is normally at the forefront of my life. For the last two weeks, my role as Mum’s daughter has been more prominent and I have been happy to be directed where I am needed most. Yorkshire Grandma and Joshua’s dad have had things under control at home, as I was expecting to go back home yesterday evening after visiting Mum in hospital in the afternoon,but the day took on an unexpected turn:

I finished my work meeting around 2 pm and when I checked my phone, Mum had texted to say that she was moving to a new hospital, where we had been waiting for a bed to become available. She had no time-frame for the move, so I still headed to where I had left her the night before . She was not in bed when I arrived, but her belongings were still there, and another patient’s visitor told me that she had been taken for an ultrasound scan, so I sat and waited for her return, resisting the temptation to pack her bags for her as I know how slowly things can move in hospitals. Sadly her blood pressure was found to be too low and so the move was in jeopardy, as it was not considered safe. The doctor recommended IV fluids to try to boost her blood pressure and then a review would take place in another hour. We waited patiently for the drip to be set up but nothing happened. As time wore on I became more anxious that Mum had not received her prescribed treatment and that we would lose the desired bed on the renal ward. So I had to make a nuisance of myself and I asked every nurse who passed the bed for my Mum’s IV fluids and I was repeatedly told that they were just coming, but nothing appeared. So I became more insistent and I found the sister in charge to make my request and almost an hour after the doctor had advised us of the plan, the drip was set up and Mum dozed, while I took some air outside, in order to calm down, before returning to the ward.

The drip finished and the nurses repeated their observations, and it did seem to have helped, Mum’s blood pressure had improved. So now we needed the doctor for the review as the evening now wore on, so more patience, then more gentle nagging was required. The registrar eventually arrived and checked Mum over and was happy that she was clinically fit to move. He went to make the phone call but then came back to say that it was now too late to move her as transport would have to be arranged and so he promised that her bed was safe and that she would move ‘first thing’ in the morning. I pushed to try to find out what ‘first thing’ meant in hospital speak and I told him that I was packing up all of her possessions, so that she would have to move on in the morning. I took home everything that she did not need and left Mum at 8.30, with instructions to get in touch if anything happened while I was not there.

Mum was not feeling very strong yesterday and so she needed a defender and an interpreter too and as I have played those roles many times in hospitals over the years for Joshua, I found that it came naturally. We know the mission for today and I am now well rested and ready to push for what needs to happen this morning. Often mothers are described as being like a lioness protecting her cub, and this is even more the case for mothers of children with special needs; but in this instance, this cub is fighting for her wounded lion-mother.

Judging Books by their Covers

It is important to never judge books by their covers : first impressions of Joshua might be that he is a mute, disabled young man with limited abilities and understanding. His cheeky sense of humour and his flirting would not necessarily be immediately obvious and these are both integral to his personality. You would need to spend time getting to know him before you saw that he understands much more than he can say, that he loves a trip to Donalds more than anywhere else and that he is affectionate, such that he loves to give and receive hugs. Today Joshua will spend three hours at his new adult respite provision, for him to get to know the staff and the setting and for them to get to know him and his unique ways. I am hopeful that he will take this new situation in his stride and settle into a new routine, but entrusting my most precious and vulnerable of all ‘possessions‘ into the hands of relative strangers, is always a frightening prospect. The reports that they have read about him in preparation ,will be brought to life when they spend some time with him alone and I am hopeful that nobody has already judged his particular book from his pretty grim cover.

This outlook was loudly demonstrated to me also yesterday and the day before : unfortunately my 79 year old mother is unwell and has been admitted into hospital, while they carry out scans and tests to decide on the best course of treatment. Yesterday afternoon she was admitted into a ward for over 75 year olds, where the doctors and nurses made some assumptions about the grey haired lady in front of them. She was explaining how bad she had been feeling but they clearly saw an old lady in front of them, someone that they expected to have carers, walking aids and to struggle to cope alone at home. Until this illness, my Mum has always been energetic , alert and fiercely independent, yet this has not been the expectation in hospital. When she first arrived, they struggled to appreciate the severity of the decline in her condition, as they do not know her: she was breathless and walked slowly and unsteadily , but it seemed that was to be expected of a lady of her age, so did not warrant any concern.

But they were not asking the right questions, they were not comparing Mum today with Mum at the end of last year. They appeared to be reading her date of birth, then making assumptions about the state of her health. Compared to the other elderly ladies on her ward, Mum is the most alert and most mobile, but she is still a shadow of her former self. It was a frightening but insightful view into the future, at how assumptions are made about the elderly . I was very glad that I was by her side to enlighten them on how my mother usually is and what we expect them to be able to return her to.

Seeing a date of birth written down, or a diagnosis in Joshua’s case, is only one piece of information about somebody, it is not the full story. It is necessary to ask questions, with an open mind, in order to understand and appreciate someone’s individuality and unfortunately there is not always the luxury of time to begin this essential fact finding mission. In both Joshua and Mum’s case, I have been pleased to be able to act as interpreter and to provide some shortcuts in that familiarisation process, to ensure that they both get the attention that they deserve.

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.

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.