Goodbye Blueberry Tuesday

This isn’t your average baking post, in fact it’s more of a recipe for disaster.

Some of you may have noticed that our Barnstaple shop hasn’t been open for a few days this week. Well, there is a very good reason for this and it all started with a rather large blueberry on Tuesday morning …

It started like any other Tuesday. Joe went off early as usual to the bakery to get the baking done with Luke. I had fulfilled my usual bakery duties and was about to embark upon some particularly dull housework when our eldest son, Sonny, came downstairs looking like a ghost and complaining of chest pain.

He was very pale, shivering all over and said that he was finding it hard to breathe. He was cold to the touch so I sat him down and put a blanket around him. For some reason my usual tough line of ‘go back to bed and I’ll bring you some Calpol’ didn’t seem the right approach this time.

Joe keeps a pulse oximeter at home due to mild hypochondria and previous high blood pressure. For some reason, I put it on Sonny’s finger and his oxygen levels measured at 60%. I tried again and it hovered around 70%. I rang Joe who consulted his right-hand buddy ChatGPT aka Brian, who insisted that we seek medical assistance immediately. Unconvinced and feeling guilty that I might be wasting their time, I called for 999.

The ambulance was fast-tracked and before i knew it we were on the NDDH Resus Ward with Sonny covered in wires and an oxygen mask, and so many different people in various shades of tunic denoting their medical hierarchy.

Following an x-ray, it was confirmed that Sonny’s right lung had completely collapsed and his heart had moved to the middle of his chest! The process of elimination and deduction was on to try and find the cause and what to do about it.

“No, he hadn’t been ill”

“No, he wasn’t coughing or choking”

“No, he was fine this morning”

“No, he’s not allergic to anything”

“No, he hadn’t had any injuries or trauma”

“No, he doesn’t play sports”

“No, he hasn’t had any previous issues with his lungs apart from when he was born”. (He was born early at 29 weeks and had suffered from a double pneumothorax within the first two weeks of his life as well as a bleed on the brain).

“No, he’s never had a problem swallowing”

“What did he have for breakfast?” “A boiled egg, some sourdough toast and some blueberries? Why, do you think I’ve poisoned him?”

“And he definitely hasn’t been ill and no-one in the family has been ill?” “No”.

Raised eyebrows and shared quizzical looks ensued. The x-ray showed quite graphically that one lung was okay and the other was a solid mass. His windpipe was in the wrong place too. After lots of hushed talk, medical jargon, pointing, hmmming and huddling, it was decide that a CT scan was necessary.

Throughout all of this, Sonny watched from his bed, his beautiful face covered with a foggy mask and tolerated being prodded, pricked, pierced, pumped and plugged in for hours on end. Anyone with experience of Autism knows that this is equivalent to hell on earth, but he endured it all with a polite smile and a nod. He was incredibly brave.

The CT scan results were in. There was some kind of blockage in his lung. The blockage is circled and it is plainly evident how much his chest has sunk down where the arrows are. The big black area is the good lung.

Infection hadn’t completely been ruled out, neither had inflammation, but somewhere along the line someone suggested it could possibly be a blueberry? Again the questions …”He definitely wasn’t coughing? When did he have breakfast? What was the timeline?” Expert after expert was consulted and finally it was decided that the most likely explanation was a blockage and that blockage was probably a blueberry, but whatever it was it needed removing as it was embedded in his lung and stopping him from breathing properly. Sonny had no idea or recollection of how it may have got there.

Unfortunately, Barnstaple Hospital only had an adult-sized piece of equipment for the job, so a trip to Bristol Children’s Hospital was in order. At this point everything felt quite jovial and trivial, but very drawn out.

Transport was organised and 9 hours after our arrival, we were ready to go to Bristol …. then there was a changeover of shift.

A new doctor questioned me again to see if he could ascertain for himself what was going on. He seemed a bit of a lone ranger and renegade! He also didn’t appear to believe in the blueberry story and suggested that it would be better to sit Sonny upright, even to get him to stand in order to straighten out his chest as he was currently slouching. Sonny was helped to his feet and then …

ALL HELL BROKE LOOSE!

His oxygen level dropped to the floor, as did he. An alarm bell went off and the Emergency Team swooped in from nowhere ready to resuscitate and revive him. I’ve never seen so many people arrive so quickly, but all with the same look of concern mixed with mild panic on their faces, but it was the look of sympathy that broke my cool. As soon as a well-meaning nurse singled me out and came over to comfort me, I thought “oh no, please don’t” and the damn crumbled. One look over at Sonny and all I could see was a frightened little boy trying not to cry, his chin trembling and his eyes fixed on me. Instantly he morphed into the tiny baby from 14 years ago in an incubator with his eyes blinking in bewilderment. The helplessness I had felt then returned, triple-fold.

I betrayingly turned my face away from his trusting eyes so I could hide my fearful tears and felt a complete failure once more.

As soon as he was back on the bed, he stabilised slightly and a more cumbersome and stronger oxygen flow system was attached to his face. The throng of people remained, hovering and ready to pounce.

It had now been twelve hours since we’d arrived at the hospital and Sonny’s Autism was beginning to take over. His invisible mask was slipping and I could see his body tensing, sense his frustration. The oxygen mask was hurting him, the multiple cannulae smarted, the plastic ID wristband was scratchy, the blanket was twisted,,, he was finding it increasingly difficult to keep it together. His fists were clenched, as was his jaw.

Another Specialist came over to explain to me that they weren’t happy to take Sonny right now with his current airflow set up as his condition had deteriorated. They explained that if the system failed he would need intubating and sedating, and that wasn’t something they were happy to do inside an ambulance on the hard shoulder. Much to Sonny’s distress, it was decided that we needed to wait for another hour or so to see if he would be stable enough to travel as he was, or if it was necessary to sedate and intubate him before we left.

At one o’clock in the morning another Specialist had arrived having driven from Cardiff in order to travel in the ambulance with Sonny conscious, but ready to act if he couldn’t tolerate the strong airflow and two-hour journey.

Two hours later after a thankfully trouble-free dash up the M5, we arrived at the ICU ward in the Bristol Children’s Hospital. The ENT team were waiting and after a brief handover, I was questioned again, all of the same questions and greeted with increasingly incredulous looks. The blueberry story was not convincing them either.

More discussions, more waiting. Sonny hadn’t eaten since 9.30am the previous day. He was starving, he was pissed off, uncomfortable and frustrated. His big eyes were pleading with me to DO SOMETHING! What could I do? I was drowning in helplessness and wretchedness.

It was decided that they needed to operate straightaway. The joking had stopped and we were surrounded by serious faces. An abridged version of what they planned to do was explained to Sonny and me, and then I was escorted to a private room by the surgeon, a nurse and A Nother.

The surgeon looked me straight in the eye and dumped a straight-talking truckload of shit on me, stony-faced.

Sonny was very poorly she informed me.

The operation held great risk.

Sonny was working on one lung and the anaesthetic made it dangerous because he had very little oxygen reserve.

He was on a lot of oxygen that he wouldn’t have access to during the procedure,

It was life-threatening.

It might not work.

They might not be able to remove any possible blockage if he was too weak and they would need to intubate him and keep him sedated until they could try again later.

His lung could be damaged

His windpipe could be damaged.

Sign this waiver that you understand all of these terrible things that could happen.

The list spiralled on and on and my tears poured uncontrollably down my contorted face. I made involuntary gutteral noises. … But it had been a blueberry, it had been funny, it had been silly… it had been solvable and now it was life-threatening. He could die!

I returned to the ward after splashing cold water on my face to try and hide that I’d been crying. It didn’t work. We had to wait for another hour before the theatre was ready and Sonny was on the verge of losing it completely. The machine he was plugged into beeped menacingly, nurses kept throwing me concerned looks laced with weak smiles. My sanity was on the precipice of an abyss and in the effort to keep my composure, my body jiggled and moved involuntarily with the overwhelm and the struggle to hold back my tears.

Again, I turned away from Sonny partly because I wanted to hug him and protect him, which i knew he’d hate, and partly to stop him seeing me fall apart.

The time had come. I asked Sonny if I could give him a kiss and he countered and recoiled with a firmly autistic NO!

The nurses laughed and said ‘teenagers eh?’ Mmmm I murmured with a half smile.

I somehow was able to walk alongside his bed to the theatre doors and even managed an almost convincingly positive “See you when you wake up. I love you” before he was whisked away in one direction and I, the other. After a couple of steps, my legs turned to jelly and I collapsed in a wild and emotional heap, sobbing uncontrollably.

A kind nurse who had seen it all before, led me back to the private room and I called Joe. I couldn’t have done that before Sonny went into surgery. The surgeon had suggested I do so following the litany of impending disasters she’d landed on me earlier. She had looked surprised when I said no.

I couldn’t because I knew that as soon as I heard his voice, the straining barrier that was keeping my emotions in, would have dramatically burst (and it did). I had to stick with the barely manageable trickle I’d been pathetically plugging with my thumb, so I could try and be there for Sonny and cope on my own.

He didn’t know that the blueberry theory had progressed to a life-threatening situation. He was really shocked, he cried, I was hysterical. He tried to console me and we both said he’d be okay with minimal conviction. He said he’d be on his way as soon as he could be.

I was given a room with a bunk bed and a shower to sleep in. Instead I had a shower and went to the parent room to make cup of tea. I sipped at it and watched the street outside slowly come to life. It was six am and I hadn’t slept for 24 hours.

There was a metal cross on the building wall opposite. Not a crucifix, but one of the metal rods that holds old buildings together. I’m not a religious person, but I quietly said the following:

Dear Whoever or Whatever is in charge of these things. Please let him be okay.

At 7.30am I went back to the bunk room, not to sleep or eat, but to wait. After ten minutes my phone sprang into life.

“Hello? Kathy? It’s Emily, The Paed Nurse. Sonny’s out. He’s sedated and he’s got a breathing tube breathing for him, but he’s okay. It was a blueberry!

***

A few hours later his lung had mostly reflated with the help of the breathing tube and he was slowly brought round. He started gagging on the breathing tube and wires going down his throat, and had to be held down by the nurses in his semi-conscious state and prevented from pulling them out. Eventually, with a little unwanted help from Sonny, they safely got them out and he returned to sleep with minimal breathing apparatus, breathing for himself and comfortable at last. The machine thrummed peaceably, displaying normal levels of heart rate, breathing and oxygen levels.

48 hours later, we are home. For the last two days Joe has baked and delivered the bread, coped with a broken bread oven, a speeding ticket, managed the shop and cafe from afar, travelled to Bristol and back twice, fed the animals, run the house and kept our other son Woody alive, entertained and fed! He ‘s understandably exhausted, so go easy on him.

We are incredible grateful to everyone we met within the NHS. It was plainly evident how unfailingly caring and professional they all are under tough conditions and substandard equipment. They deserve better. From the cleaner to the consultant, every single one of them did their job with patience, kindness and a smile on their face. We are so lucky to have our NHS. It is an amazing and unique thing of wonder. (Nigel, keep your dirty mitts off!)

So , that is why our Barnstaple shop has been closed for a couple of days. Sorry about that, but we’re all back to normal now, albeit a little changed with a refreshed sense of appreciation for life, family and living.

Goodbye and good riddance Blueberry Tuesday. We’re not gonna miss you.