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.