Progressively worsening admissions

Zack remained reasonably well until around May of 2021 when he was admitted into Warrington Hospital requiring oxygen and antibiotics. 

What followed was a series of progressively worsening admissions into hospital. From this point until Zack passed away he had nine admissions. This period became our battle ground, looking back now I can see how we were in a constant stream of stress, fight or flight, we were battling to save his life. 

As each hospital admission occurred the need for oxygen increased, the use of stronger IV antibiotics was required. We got to the point whereby we were being trained to provide Zack with chest physio twice a day, nasopharyngeal suctioning, giving saline nebulisers, colomycin nebulisers and oral antibiotics. 

Our world became a routine of chest physio and suctioning just to keep his secretions clear. And as for keeping a check on his oxygen saturations, that was constant. 

Each added routine medical instruction was chased by ourselves. During one admission the respiratory doctor changed his oxygen saturation levels to go from over 92 to anything above 85 is fine as long as he isn't going blue or working hard. I think what this doctor failed to tell me at this point was that Zack was in respiratory failure. 

I remember asking in one consultation, following a bad admission for an infection. Is this it? Is Zack deteriorating? To which I was told no, this isn't his new normal. Itt was, it was to become his new normal. His lungs had colonised pseudomonas, a nasty bacteria, notably difficult to ever eradicate. Despite our best efforts of chest physio that tried to loosen the sticky mucus off his lungs we could never clear it. 

I remember one day going through Zack's daily routine, patting his back for five minutes trying to clear his lungs. He looked over at me, as though he was saying enough, enough. You can't win. And we couldn't win. 

It took a new consultant to speak to us frankly to confirm what I knew. Zack's lungs were failing, despite all we were doing, his body could not support him any longer. His body had grown around the injury of his brain and he was now struggling.  We talked about advanced care plans, about what we may or may not want to do. What interventions we would follow. 

After this meeting Zack didn't give us time to complete the plan, as usual Zack took matters into his own hands and he lead the way. He took us by the hand and walked us through his final journey. 

Let me start from the beginning

Do you remember Covid and the pandemic when we all had to be locked together in our shared accommodation day in day out. Home schooling, working from home, being in each others constant company 24/7? 

I am so thankful for that time. That time that slowed the world down. It was a tragic time, with so many families losing loved ones, frightening and foreboding. And yet, as I look back, seeing where I am now, I am thankful that we got to spend so much time with Zack. 

We made the decision very early on to keep Zack out of school. In fact, he was on the vulnerable list so had to shield. Covid was our enemy to be feared, we had no idea what it would do to him if he caught it. How little we knew then that it would not be Covid that took him from us but another respiratory condition that would create our biggest battle.  

Let me start from the beginning.....

Throughout Zack's life he did not have very many issues with chest infections. Yes, occasionally he had a few a year but they were always dealt with at home with antibiotics, we didn't have too many admissions to hospital. Our biggest worry with Zack health wise was always his epilepsy. Everything else were just some side issues, nothing to worry about. That was until October 2020. I think that was the day everything changed.

Zack hadn't been so good over the previous couple of days. At night we use Arlo cameras to watch over him. Whenever he makes a move or a sound it pings to our mobile phone. Sadly this night, the cameras did not work and we found Zack at 5am on his back gasping for breath. He had been sick and somehow managed to wiggle over onto his back whereby he had aspirated. I was terrified. We called for an ambulance, the first time in his life we had ever needed emergency care. Fortunately the first response came quickly and then the second response. We were rushed to A and E. At this point Zack was still in a very bad way, he was having several seizures one after the other. The emergency doctors went through a number of procedures to try and get Zack's oxygen levels back under control. 

They couldn't. An anesthiatist consultant spoke to me and said we are going to have to ventilate him and transfer him to Alder Hey Children's Hospital. My world broke that day. I thought I would lose him. I pleaded to do something else, to not ventilate him. This consultant, this lovely man, (whom I would meet again at the end of Zack's journey) said it was all they had left to do to save him. And that was the day Zack was ventilated for the second time in his life. 

In recovery

We were transferred to Aldey Hey Intensive Care and Zack was stable. Zack being Zack decided that having artificial breathing was not for him and it was removed the next day and he was placed on high flow oxygen. However, dramatic as he was, he decided just before they were going to move him to HDU to drop his oxygen saturations to 70 whilst not going blue in the face nor looking like he cared. The nurse hit the button for the crash team to which many doctors came running into the room. Again for a second time I thought he was going to die that day. 

Turns out he had plugged his throat with some mucas which the physiotherapist moved via suction. Zack was so sedated by the drugs and tired with his illness that he wasn't strong enough to cough or move the secretions. What followed over the next six days was a move to HDU, many IV antibiotics, chest physio, suctioning and a weekend stint on a bipap machine. We made it to a ward for a day or two and then we were sent back home with one fixed Zack. 

Like nothing dramatic had ever happened

He had a bad chest infection and had aspirated causing a collapse in the left lung. For me I think this was the beginning of the road that would eventually take Zack from us and the start of our battle with all things respiratory. 

Exposing our grief

 Hi, this is the hardest and most difficult post I am having to write. 

I haven't been on here for a very long time updating our wonderful, manic, crazy life and there are many reasons for that, some I can't explain and, well, I just haven't felt like writing.

But now I do feel the need to write again, but this journey has taken a different turn, ultimately one I knew would come and one I could not stop.

Sadly Zack our wonderful, gorgeous, brave beating heart of our family passed away at Clair House on 3rd April 2022 aged 13 years. 

Thirteen amazing years we had the privilege of sharing our lives with Zack. And so this blog that began and was written to help others at the start of their journey is now going to expose the most difficult, darkest side of our paths.

I can't say it will be a cheery journey all the way through, I'm probably and very vulnerably exposing our grief. But I want to allow others who may now be facing this stretch that there is hope, there is light.

I also have much to reminisce about, to catch up on that I can't leave the last few years of Zack's life untouched. View this next chapter as the Upside Down side of life if you will, another existence but one that can still offer brilliance even in its darkest moments.

The following is in memory of Zack, my love, my heart, my forever.

Our last photograph of the legend