A couple of Thursdays ago on the way home from the planetarium, I relived a faded memory.
The sort of memory you hide away to save yourself from reliving the distress.
This was triggered by a vivid blue flashing light which appeared out of the dip of the 2 hills on the opposite side of the motorway.
As I watched, the ambulance emerged towards us, I held my breath.
Thinking of our story, reliving the moment.
After tucking Billy into bed and wishing him sweet dreams, I sat down and reflected on the night I’m going to tell you about.
I will warn you before I start that this small chapter of our story is one of the toughest, I’ve had to write.
For me, this memory has been suppressed for many years.
It was the night we nearly lost Billy for the first time.
Like they say, the first is always the hardest.
This event happened on the 15th of November 2017; when Billy was nearly 6 weeks old.
But it all started the week before on the 7th of November.
On this day Billy had his first operation called a Kasai.
Kasai is an operation to replace the blocked bile duct with a segment of his small intestine.
After 6 days of recovery Billy was discharged home on the 13th.
As a home bird by nature, I couldn’t wait to get home to my own surroundings.
I vowed; Billy and I would be having a couple of relaxing days to catch up after the stresses of hospital life.
To allow us time to climatise to our new regime.
Like anything new, finding a routine is key, we needed to figure out his new medication, new feeding routines, and medical appointments.
But, I hadn’t anticipated the ‘to do list’ from the hospital on discharge.
The first ‘to do’ was to source a repeat prescription as the hospital had only supplied a weeks’ worth of medication.
Simple right?
As a person that likes to do things right, this was at the top of my list of things to do.
This rolled in to the second problem, organising bloods and blood forms.
I can’t remember exactly, but I think our specialist liver hospital wanted them once a week.
As we didn’t live local to our liver hospital, there was a need to involve our local hospital for support in this area.
Thirdly, the monthly check up in London needed some thought.
Do we commute up and down in a day?
Or
Do we stay some where local to break up the journey as the appointment was book for 3.30pm for an ultrasound and clinic review afterwards?
At this point I felt a little lost and had no support group of other parents to ask.
I felt the ‘vow to relax’ was impossible within the moment, as this list of jobs was too important to ignore.
As the day of the 14th disappeared and only little jobs got ticked off the list, I started to realise the hospital system was complex to navigate especially for a first-time hospital mum.
As I sat down to feed Billy his medication formula before bed, I couldn’t wait to crawl into bed myself.
I was exhausted but to the point I found sleep elusive, due to the ‘to do list’ being in the forefront of my mind.
As I lay drifting in and out of sleep I was woken by an uncomfortable cry.
As we jumped out of bed and looked over the moses basket, Billy was squirming with his knees against his chest.
His normal contented look was filled with pain, so I reached over, picked him up and drew him in close.
This action felt awkward, like we were no longer a pair.
As my head couldn’t work out what was causing this awkwardness without a visual aid, I laid him down on the bed and started to undress him.
In front of my eyes was a significantly distended tummy, like the ones I had seen on other liver children within the hospital.
Over the next 30 minutes, we made a plan, packed a bag, and adjusted the car seat to fit Billy’s extended tummy so he was comfortable and safe.
Alec and I had decided that I would go on my own, so he could get some rest so he could be fresh to take over.
The drive to hospital was tense, especially with the intermittent cries and silences coming from the back seat.
When Billy went quiet, the question was, has he settled or had he stopped breathing?
Thank God I had purchased a baby watcher mirror, so I could see him from the driver’s seat.
After a couple of minutes, I realised that it would be easier to angle the middle mirror towards the baby watcher mirror, so I didn’t have to keep looking over my shoulder.
To my relief the roads where clear and the carpark was empty.
As I bundled everything into the pram including Billy, I locked the car whilst I ran towards the hospital entrance.
With a sigh of relief Billy was seen within minutes and was transferred to an overflow section of A&E.
After being delivered by a nurse, I was left waiting with Billy within an empty ward.
After a few minutes of silence, a nurse came into the room and flicked on all the lights.
‘Is this Billy’ she asked?
‘Yes’ I replied.
‘Hi Billy I’m here to take your observations’ while she said this she was bending over Billy, holding his feet, and smiling at him.
Observation is a routine monitoring and recording of a patient’s vital signs to assess their current health status, these include the patient’s respiratory rate, blood pressure, heart rate, and oxygen saturation levels.
She looked at me with a smile and said ‘Is this ok mum?’
‘Yes of course’ I replied.
After a couple of minutes, a doctor appeared wearing a welcoming smile.
He walked with purpose across the room towards me and extended an arm to shake mine.
‘Hello mum, I hear you had a fright tonight’ he said in a calm voice.
After filling the Italian doctor in on the last week of events, I handed him a couple of stapled pieces of paper.
I explained that I had been given this short guide by the specialist liver centre to help with identifying possible health concerns.
I said I thought Billy had Cholangitis on the observations I had seen.
Cholangitis is an infection of the bile ducts in the liver resulting in inflammation.
After examining Billy, he asked if he could borrow the information sheets to read and went to the desk in the corner and sat down.
After a few minutes, he came back and handed over the paper and explained that he was going to call the specialist liver centre for advice.
But before he left, he prescribed Calpol for Billy and asked the nurse to administer it, he smiled and said ‘let’s try and keep him comfortable.’
We both nodded and he exited the ward.
Part 2 coming soon…
Remember you may not feel strong but you are
Love
The Rose-Tinted Mum
The Rose Tinted mum 