It was amazing how quickly I found myself falling into the hospital bubble. Encased in an orb of film that aided in blocking everything else out.
A life within the confines of a very sterile structure.
How quickly the life that we had, and the one that continued on the outside of the hospital, just faded into the background and, at times, went forgotten in those early stages of diagnosis.
The hospital became a place where normal rules no longer applied, where you stopped knowing what day it was, where conversations about neutrophils and sodium became as ordinary as conversations about the weather, and where leaving the hospital could actually feel more frightening than staying.
It took me a while to realise that I needed to break free from the bubble that we had become immersed in.
And then that breaking-free process was incredibly challenging.
Not knowing if I could cope in a crowded supermarket. Not wanting to be too far away in case anything went wrong, and needing to know that I could return in good time.
Hospital life was full of numbers and regimented timings. Everything was planned to the minute or hour.
There was the constant number watching. Heart rate. Temperature. Oxygen levels. Blood pressure. Numbers that were measured every minute, every hour, every two hours or every four hours, depending on where Tate was in his treatment.
The more serious his condition was, the more closely they monitored him.
Obs.
The constant obs.
We started to refer to them simply as “doing his numbers”. We would say to Tate, “Just doing your numbers,” and he would comply every time, never turning a nurse away or complaining that he had to do it again.
I couldn’t even imagine the number of times his “numbers” were checked.
The finer details of a temperature or heart rate could indicate changes in Tate’s health. Changes that the medical team needed to see quickly. And we gradually learnt what those numbers meant.
I learnt this on PICU and carried that knowledge with me throughout his treatment. It had its pros and cons. Understanding what the numbers meant gave us some control in a world where very little felt controllable.
But it also meant that we noticed things.
We watched things.
We worried about things.
Then there were the medications and the timings of them throughout the day and night.
Some were given via his gastrostomy peg, or previously his NG tube. Some were given intravenously via his Hickman line. Others were given as an infusion through one of the many pumps that surrounded his bed.
Those blinking pumps.
These were one thing that none of us would miss from this process.
The infusion pumps alarmed.
A lot.
There was an alarm for everything, and of course they were very sensitive.
An alarm for an air bubble.
End-of-infusion pre-alarm.
End of infusion.
Occlusion pre-alarm.
Occlusion alarm.
Underflow.
And it wasn’t a delicate little beep.
It was a piercing, beeping alarm that seemed to cut straight through you.
When we were in a room with a closed door because Tate was in isolation, the nurses didn’t always hear them straight away. Nor were they always available straight away to do anything with them.
And then there was the chorus from the other rooms down the corridor.
All trying their hardest to bleep in sync, but never quite getting it note perfect.
They needed a very passionate conductor from the Royal Philharmonic Orchestra to get them in line.
Every medicine that was infused was followed by a “flush” to ensure Tate’s line was clear of the medication.
So, more alarms relating to those.
There were times when Tate had five or six pumps alternating throughout the day, depending on the stage of treatment and whether he was having fluid top-ups or a blood transfusion that day.
Some days, you thought you were going insane.
You just wanted to pick up the pumps and throw them out of our top-floor window.
The noise sat in your ears like a worsening tinnitus.
We learnt over time to silence them, and also when we could turn the pumps off.
Some nurses were stealth and would get into the room just as they started to go off.
I swore I would be hearing that piercing beeping in my dreams for a while to come.
Tate, meanwhile, slept through them.
Thank goodness for that at least.
Then there was the constant flow of medical staff in and out of the room.
The shift changes.
The ward rounds.
The discussions around numbers that became more detailed and included Tate’s sodium levels, his bloods and neutrophils.
The hospital and medical lingo that we gradually forgot not everyone on the outside of the hospital understood.
The blank faces as we spieled off a medical story to our friends said it all and reminded us that we needed to find other ways to explain things.
Hospital life had its own language.
Its own routines.
Its own rules.
And without really noticing it, we had started to speak that language too.
As Tate had been a long-term inpatient on the ward, we developed a core of nursing staff who knew him and us well.
There was banter between us and them, as well as with the other parents on the ward.
“The A Team,” we called the core staff.
The ones who had enabled Tate to get through his treatment and gain so many positive experiences and relationships along the way.
These people became such an important part of our hospital bubble.
They knew when something wasn’t quite right with Tate.
They knew his personality.
They knew when he needed a push and when he needed a bit of space.
They knew us too. And sometimes that was just as important.
There was also the complete loss of privacy and control. Hospital life meant that very little was actually ours anymore. When you slept, when you woke, when you ate, when you washed, when Tate was washed, when his observations were taken, when medications were given, who came into the room and when they left. Even the simplest things that we had previously taken for granted suddenly became part of someone else’s timetable.
Doors opened without knocking, lights came on when you were half asleep, curtains were pulled around you, people discussed Tate’s body and bodily functions as though they were discussing what they were doing at the weekend.
There was no embarrassment anymore. Not really. You couldn’t afford it. You learnt to have conversations about wee, poo, vomit, bloods and bodily functions with complete strangers without batting an eyelid. Your child’s privacy became a medical necessity rather than a personal choice, and our own privacy seemed to disappear somewhere along the way. We just adapted. Because that was what we did. We had to. But it was hard. For me particularly as I have many of my own sensory and privacy needs so adapting was stressful. But adapting I had to.
Hospital life also included regular visits to the dirty utility. The place of anything that came out of any of the children on the ward. Staff on an oncology ward were obsessed with wee, poo and vomit.
Weighing every ounce.
And even more so with Tate because of his Diabetes Insipidus.
There were nights when we had to change Tate’s pad every two hours.
Nothing worse than waking a very relaxed, sleeping little boy from his sleep to have to change him again.
He had worn pads since surgery, but only because he wasn’t always able to get out of bed to get to the toilet when he was rigged up to so many of the bleeping machines.
It was all very glamorous.
Our top-floor orange room had views across Southampton docks, which created much learning for Tate over the following months.
Importing.
Exporting.
Goods travelling to and from other countries.
The weather.
And the helicopter coming in and out of the hospital.
At night, I could watch the hustle and bustle of the docks continue.
The skies changed from sun-tinted to dotted with stars, over and over again.
The world outside continued.
Ships came and went.
The weather changed.
People went about their normal lives.
And we remained in our bubble.
With night came a different feel to hospital life.
The ward quietened down and all you could hear were the nurses’ buzzers from the rooms of patients, the footsteps of staff up and down the corridor, or the chats from the treatment room opposite ours.
Then you tried to sleep while nurses were in and out of your room.
This took me ages to get used to, being such a private person.
I woke at the door opening.
The light that then basked the room.
The noise of the pump buttons.
The bin lids squeaking.
There were certain nurses that always made me chuckle from my bed as I lay there, listening to them try their hardest to be quiet.
But in the process, they bumped the bed as they walked by, clattered their laptop down on the table, or shone their torch in our faces as it dangled from their mouth to free their hands up.
Even Tate used to giggle at their inability to stay quiet.
A few months in, I became much more accustomed to the interruptions.
The nights also brought more emphasis on emergencies.
An emergency buzzer going off in someone’s room always sounded worse at 2am than it did in the daylight hours.
The emergency alarm was triggered and the clatter of feet from all the medical personnel swarmed onto the ward, directing themselves to the associated room.
And then, eventually, they would be stood down for any number of reasons.
We had been that room.
My emergencies with Tate had always been at night.
There was something about hearing that alarm in the middle of the night that made everything feel even more frightening.
The hospital was never completely asleep.
It just changed its rhythm.
And then there was the lack of fresh air and exercise.
The stagnancy of living in a hospital room.
Not being able to leave your child for any length of time.
The lack of fresh air and ability to move as you would in your “normal” day-to-day life became prominent.
I found this to be one of the most difficult things to deal with at times.
But Tate had no choice.
And so we supported him by ensuring we were with him, as we should have been as his parents.
It was a small price to pay in reaching the end goal.
As time went on, being away from the hospital became a positive thing.
When we encouraged ourselves to burst through the skin of the bubble, we could reap the rewards of doing so.
We could recharge our batteries so that we could return to Tate and be the best for him.
We could remind ourselves that there was life continuing outside of the bubble, and that we needed to continue with that life for both Tate and Nell’s sake.
Our routine each week meant that we slotted into our home or hospital roles very quickly.
We learnt to convert our heads into whichever arena we were in.
Hospital brain on.
Home brain on.
We either floated along in our hospital bubble, or had our home minds switched on for the time spent there with Nell.
And then we handed over the seal to each other on our own regimented days and times.
An hour or two together on a Friday and Monday became our handover.
The hospital-life baton passed over.
The home-life baton passed back.
A quick download of what had happened, what needed doing, what Tate was like, what Nell had been up to, what the hospital had said, what needed remembering.
Then one of us went back into the hospital bubble, while the other returned home.
And we carried on.
Day by day.
Hour by hour.
Sometimes minute by minute.
The hospital bubble became our temporary world.
It contained the numbers, the pumps, the alarms, the medications, the obs, the staff, the emergencies, the laughter, the tears, the frustrations and the tiny moments of normality.
Outside of it, the rest of the world continued.
Inside it, we were focused on one thing.
Getting Tate home.
Medical jargon explained
- Hickman line – A thin, flexible tube that is inserted into a large vein, usually in the chest, and sits just under the skin. It provides longer-term access to the bloodstream, meaning medicines, fluids, blood products and sometimes chemotherapy can be given without needing a new cannula each time.
- NG tube – A nasogastric tube. A thin tube that passes through the nose and down into the stomach. It can be used to give milk, food, fluids and medicines when someone isn’t able to take enough by mouth.
- Gastrostomy/PEG – A tube that goes directly through the skin of the abdomen into the stomach. It provides a way of giving food, fluids and medicines directly into the stomach. PEG stands for percutaneous endoscopic gastrostomy.
- PICU – Paediatric Intensive Care Unit. A specialist hospital unit where very unwell babies, children and young people receive close monitoring and intensive treatment. Children on PICU often need support with things such as breathing, blood pressure or other vital body functions.
- Obs – Short for observations. These are regular checks of things such as heart rate, temperature, breathing rate, blood pressure and oxygen levels. They help the medical team monitor how a patient is doing and identify changes in their condition.
- Neutrophils – A type of white blood cell that helps the body fight infections. Neutrophil levels can become low during some treatments, particularly chemotherapy, which can make someone more vulnerable to infection.
- Diabetes Insipidus – A condition where the body is unable to properly control how much water is kept in the body. It can cause excessive thirst and very large amounts of urine. It is different from the much more commonly known diabetes mellitus (diabetes involving blood sugar).