I'm putting away the washing. Some is going into a wheeled suitcase, but it's not a holiday I'm packing for. Tomorrow our six-year-old daughter is having neurosurgery to improve the blood supply to her brain after she had a stroke "out of the blue" just over a year ago. She made an excellent recovery but remains at greater risk of another stroke and our lives have been turned upside down by this.
School have an emergency plan and can now do simple neurological checks and there's always one of us nearby to whisk her to hospital if she has another stroke. Sadly, we know we probably couldn’t risk waiting for an ambulance, not at the moment.
Her neurosurgery will take all day and should eventually help, but it has its own risk of complications. While I put away her school uniform I ponder the preciousness of life and how I used to take the continuation of our normal life for granted.
I stop and wish, with every part of me, that she will return from hospital alive and well so that she can skip to school once again in the red and grey uniform in my hands.
I yearn for a good outcome and wish this was not our family’s story
She needs to be admitted to hospital the night before the operation and just getting there is a massive organisational feat. Our second child is only little; he started school last year. He will stay with a friend and will be ferried to school this week by other friends.
I pack his school stuff, books and favourite toys. I create a table to capture who is where and when, back-up plans, contact numbers and even who is caring for our Guinea pigs.
This week we kept both the children away from school for a few days to avoid bugs ahead of the surgery. We only told our children and local friends about her operation two weeks ago. We have received lots of kind and optimistic messages and thoughtful presents from friends and family, near and far. It is wonderful but also makes it all terrifyingly real.
When it is time to leave our house our children are trying to be brave. As they spontaneously hug each other, my heart hurts. The suitcases are in the car, we drop off our youngest and then we're off to the hospital. Roald Dahl’s audiobook The Twits distracts us all. When we get there our daughter is small in the hospital bed. She needs a cannula and has medication to help but she's still very distressed. She goes to sleep eventually, her daddy's in the hospital with her tonight and I'm in a hotel nearby.
A lovely nurse apologises to me in the ward corridor
My overnight turn will be tomorrow. By then she will be in the paediatric intensive care unit. This is where we will wait to see how she is post op, it's where they will regularly check if she's had another stroke or developed seizures due to the operation. I yearn for a good outcome and wish this was not our family’s story.
It’s operation day. She's been nil by mouth overnight and we've seen the anaesthetist and surgical team on their rounds this morning. The consent form with that daunting list of possible surgical complications is checked. A nice doctor has drawn an arrow behind our daughter’s left ear marking the correct side for surgery.
I brush her beautiful long hair that will soon have a shaved patch to allow them to remove a piece of skull and enable access to her precious brain below. The next thing to happen today should be a trolley arriving to take her to theatre. We all sit close and enjoy a puzzle, then a cartoon and then another...time is passing.
They haven’t got enough specialist nurses to safely cover the intensive care unit tonight
The trolley doesn’t arrive, instead two hospital managers come over looking stricken. They say the surgeons, anaesthetists, operating department staff, porters, recovery staff and countless others are all assembled but they haven’t got enough specialist paediatric intensive care nurses to safely cover the intensive care unit tonight.
The women standing in front of us have spent the last two hours ringing round staff, agencies and other hospitals to see if the specialist nurses needed can be borrowed or induced to work here tonight. But they are still three or four nurses short.
They explain that this regional intensive care unit is busy and some children can’t be moved because they're still too ill. The surgical teams have each been making the case for which of the poorly or high-risk children should have tonight’s
intensive care bed. It will not be our daughter today.
These managers look wretched and are so sorry.
The operation is cancelled. Our daughter's relieved she can go home. We send a lot of texts to share the news about the cancellation and begin undoing our plans.
It's difficult to attract enough staff when pay has decreased so much in real
terms
A little later I go to fetch our daughter some breakfast. A lovely nurse apologises to me in the ward corridor for all the wasted time and effort to get here. I start crying. I explain that I am not so bothered about the effort, I just can’t bear the thought of finding myself being apologised to again in the future because there has been a tragedy resulting from delays.
I'm still quietly sobbing (still holding the cereal box) when my husband appears. We cling to each other, rooted to the spot in the paediatric neurosurgical ward corridor, scared about what might happen and now able to share that fear with each other out of sight of our daughter. The kind nurse takes the cereal box from my hands and gives some to our hungry daughter.
Later our neurosurgeon reappears, he's had many of these conversations in recent months. Chronic frustration is evident on his face, as is the weight of carrying a caseload of seriously ill children through this increasingly challenged system.
Another medical consultant with a hospital leadership role accompanies our surgeon to meet us and talk. They tell us nurse recruitment has been especially difficult since the pandemic, people got burnt out, many experienced people left and it's difficult to attract enough people when pay has decreased so much in real terms.
Car parking limitations and charges and a new clean air zone have also added to the costs of working here. They even struggle to find ways for the nurses to get home safely after late shifts. We hear how surgery felt safer when the team was well used to working together over many years, but current low staffing levels and high turnover adds to the pressures and to the risks for patients.
I fear these clinicians will suffer if they need to make such decisions too frequently
Now we are back home, our children are tucked up in their beds and I'm writing down this cancellation story. Our story highlights the generous kindness, commitment and expertise of NHS staff but reflects the immense strain on the system. It will be one cancellation story amongst many others that will happen this week and this year and that enrages me.
I fear that these clinicians will suffer if they need to make such decisions too frequently, it risks causing them moral injury. There are no easy answers, but ways to give our NHS the resources it needs just have to be found.
I don’t know how our own story will unfold but I hold tightly to the hope that it will be okay. With luck this will all become a story that our children both tell other people in the future, just one of their stories about something that happened to them when they were small.
