Over Joshua’s lifetime, we have had several visits to hospitals, starting with his stay on Special Care for the first 11 days on his life, several visits to A&E, his week long admissions on various Children wards for the Ketogenic diet and video EEGs and of course his brain surgery at Great Ormond Street. I have stayed with him on every one of those hospital stays and so I have picked up some survival tips along the way, which I would like to share:
- Try to be a patient patient as you are not the only one there. You can see how busy the nurses and doctors are, so you need to be assertive but tolerant too. I hover around trying to capture someone’e attention, with a smile, rather than abusing the ‘help buzzer’ unless absolutely necessary
- Try to humanise the experience through conversation and showing an interest in the staff who are taking care of you and your son. Try to learn, remember and use the names of nurses and doctors – I learned that tip from Mum when in hospital with my dying father. While they are attending to your care, chat with them; even though they may only be looking after you for 12 hours before a shift change, they can be a useful ally and it makes the experience more pleasant for everyone.
- Write everything down : you usually only get one opportunity to see a doctor/consultant in the day ,on their morning rounds. If I have not got notes on things that have occurred to me during the course of the day and night before and questions that I want to ask, then I inevitably forget. It is helpful to keep notes for yourself of things that are hard to remember, such as difficult drug names, the names of conditions that are raised or even doctor’s names too.
- It helps if you are the type of person who can sleep anywhere and through anything, which luckily I am. I have always been given a camp bed or foldaway bed, never having to slum it in an armchair as some parents do I know. But I also grab naps when Joshua has slept, during the day as you never know what is around the corner.Time is an odd things when you are in hospital too, I have usually found that the days are busy and that the time has gone pretty quickly. You are in your own little bubble while in hospital and the outside world takes a back seat.
- As the carer of the patient, you need to have a stash of food and drink as , while the patient will have regular meals, there is no provision for parents/carers. When I have been there alone with Joshua, I have had to ask a nurse to watch over him while I have nipped to the canteen or vending machine. Children’s wards are better equipped with snacks than adult wards, and some nurses have been happy to provide toast for us to share for breakfast. But it is not long before you become bored with sandwiches and it is a real treat when you are allowed outside for ‘real food’!
- When the Doctor says that you can go home, do not, as I did on the first occasion, rush around packing up your belongings and sit on the bed in your coat. There are time consuming processes that have to be gone through, such as discharge paperwork and organising any take-home drugs, that seem to be able to take all day. So now I do not get too excited at the going home news, but I only begin to pack up once I have the paperwork and drugs in my hand. Before we leave, I try to seek out the staff who have taken care of us during our stay, to thank them, as it is both polite and you never know when you might encounter them again. Joshua has certainly seen many of the same faces on return visits and so it is helpful if you were not the dreaded patient and fussy mother from your previous stay!
I have found that those basic tips, help to make any hospital stay go more smoothly. Nobody likes hospitals and the goal is often to get released as soon as possible, but these guidelines might prove useful for anyone who is facing a hospital stay for the first time.
I am delighted to report that we came home from hospital last night, armed with two weeks of strong antibiotics to eliminate Joshua’s lung infection and we are to have a blood test after that, to ensure that it has gone. While on the Children’s ward, I learnt several things:
- It is important to be polite and grateful to those who have helped us. We were looked after really well from the start to the finish of this crisis and it has been important to recognise and thank good service. When we got home last night, I completed a satisfaction questionnaire for the Ambulance Service to praise how well they took care of us and I will find something similar for the Trust too. I thanked everyone who assisted us in hospital – nurses,doctors, cleaners, auxiliaries etc – and I beamed with pride every time Joshua followed my lead and thanked them too, which he did quite a lot once he felt better today and it never failed to raise a smile. They are not all nice jobs, so while someone was cleaning our cubicle for us or was making his bed, I would chat, rather than sitting in silence or ignoring them.
- My mum taught me and my sister a good trick when we were all three staying on the dementia ward with my Dad; she would find out ,then use each nurse’s name so she always made the thanks, personal. When I was paying attention, once Joshua was out of danger and A&E, I adopted the same approach; I would read name badges or try to recall how they introduced themselves. They went to the trouble of addressing Joshua by his first name,they even asked me if he preferred Joshua or Josh, and I explained that he answered to both as we used both. I would tend to be called ‘Mum’ but the nursing staff had enough to remember ,without trying to recall parents’ names too, even though I would always introduce myself as Emma.
- Time goes slowly on a hospital ward but I could see that they were busy attending to all of their patients, but I would try to be patient as I could see that they were doing their best. So if I could do something myself for Joshua’s care, to save them the trouble, then I would , after all I had little else to do as I had not taken any distractions in the ambulance. So I found my way around the ward so that I could get Joshua yogurt from the fridge, or I found the Sluice where I would take dirty bedding and towels. I gave him all of his oral medication while we were there and I even watched and learnt how to reset the pump when he bent his arm and stopped the IV drip from working properly, rather than listening to the alarm going off for an age.We had been told in the morning that we would be discharged during the day but I had asked them when to expect that so that I could ask my husband to attend to collect us and I was told ‘late afternoon’, so I asked him to come for around 4pm. At 3.45, I asked if the paperwork and take-home drugs were ready for us to be leaving, just as a nudge. I opened our door, which had been closed all afternoon for peace, to make sure that we were not forgotten. Joshua had removed his own cannula, but he needed the back of his hand cleaning up, so I asked about that too. But although I was anxious to get away and keen to get home, I tried not to nag, but waited as patiently as I could. Without me chasing again, our nurse arrived with his drugs and paperwork and she told us, once she had removed his bloodied plaster, that we were free to go.
- We were mostly in cubicles on our own so there were not many opportunities during this stay to chat with fellow patients or their parents but I do try to do that too. It helps to pass the time and also, having a child on a ward gives you immediately something in common to talk about. This was most valuable during our week long stay at Great Ormond Street in 2014, when I chatted with parents whose children had undergone the same brain surgery as Joshua and I am still in contact with two such mums, almost five years later! It is a bonding experience to share such a life changing event, so it is a really quick way to make friends as you support each other and inevitably compare notes.
Armed with these tactics, it makes our times in hospital bearable. People often wish that we get home again quickly and clearly that is the aim. But I find that being able to hand over responsibility for my son’s medical needs to experts, is reassuring as it means that I am no longer responsible for making big decisions about his care and I find relief in being able to step back for a few days. Once I dial 999, I am inviting in expert help and I am more than happy to follow their lead and do as I am told. In a way I become more Joshua’s mum in this situations, and less of his carer somehow and I welcome that support.