Perhaps a morbid read

Recently we returned to Claire House. I hadn't visited since Zack's death and to be honest, I don't think I was prepared for the affect our return would have on all our grief.

We went to complete the pages for Zack in the memory book. I can't decide whether I find or found it comforting or distressing. 

Zack's entry in the memory book

Claire House Hospice on the Wirral was to be our saving grace in the last part of Zack's life. The doctors both there and at the hospital moved heaven and earth so that they could transfer Zack for end of life care. 

The first hurdle was to be the transfer and an ambulance from another Liverpool hospital very kindly offered to undertake this journey. Zack was still on High flow oxygen and fortunately the hospital had a portable version to use for transfers, It required an anaesthetist to travel with him and as it turned out it happened to be the original anaesthetist who saved his life two years ago. Now here we were with a very different outcome inevitably coming our way but an opportunity to say thank you to the doctor that bought us more time with Zack. And I did, I thanked him and he put his hand on my shoulder and said please you don't have to say thank you it's what we do. 

Yes it is what they do,  they do this day in and day out, saving lives, sometimes not being able to save lives and sometimes walking a little of the way during the end of someones life. It is only when you experience how great our medical care system can be that you really do appreciate it. And as you know, I have experienced both the good and the bad. But for Zack, I was determined that his life was not going to finish as it began and for those people involved I am forever grateful.

Now I know this blog has become somewhat depressing, perhaps a morbid read, but it is Zack's story after all and the end is sad but as with his life it was also interspaced with laughter. 

Laughter? Yes, laughter, in the dark, there was laughter. It's a strange concept isn't it?  But grief has an odd way of twisting you from one emotion into another without much warning. And whether your grief allows you only to feel sadness, or hopefulness, or regret or even laughter there is no right or wrong as I am beginning to discover.

Just as our lives with Zack were always full of laughter and constant dramatic interludes, his death was no different and I think even he would have found this story hilarious. So forgive me if you think, shock, what poor taste, but it isn't it was just another dramatic comedic interjection in Zack's life and a little light relief that was needed at the time. 

Back to where we where then, Zack was comfortable in hospital, on high air flow and they were getting him ready to transfer to Claire House. Dan was going to go with him and I was going to meet them at the hospice.  

Sounds simple you would think. Nope. Dan and Zack successfully got to their destination, myself on the other hand got lost in the middle of Liverpool unable to find the place and I reached a new state of stress. Four phone calls I received from Dan asking where I was as they needed to take Zack off the High flow and put him just on oxygen. The concern was that they didn't know how long he had and we might not make it in time. 

And again I don't know how I knew this but I did, look, Im not turning into Sally Morgan UK psychic, call it intuition or a gut feeling but I knew Zack would wait and it wouldn't be until the next morning we would say our final goodbye. So whilst I was stressing, there was also an inner voice that I trusted, I knew we would be okay.

By the fifth call Dan said they are going to blue light you in stay where you are and a police escort will find you. "Seriously",  I said.  "Yes", he replied. 

Apparently the conversation in the hospice went alone the lines of,  "Do you want us to get her a police escort here?"  To which Dan said "Can you do that?"  "Yes", they said, "Watch this."

And sure enough within five minutes I had a call telling me to go to the tunnel wait there and someone will come and find you. Four police cars later driving past, none for us, we went through the tunnel. 

A second call from the police, "Where are you?"  "Well on a dual carriageway opposite a shopping centre." Cue blue lights going past me. Another call, "Where are you again?" To which I replied,  "He's just gone past me." Honestly you couldn't make this up. The loveliest police officer finally found us and said, "Do you want to get in here or do you want to drive your van?"  To which I replied, "You joking I'm not leaving the van here I'll never see it again." Sorry people of Liverpool, but it was a proper dodgy part. 

What followed was the fastest I've ever driven down roads following a blue light going through every red light. Scarlett in the passenger seat beside me said, "Oh my god mum you've gone through a red light, this is mad." 

We eventually made it. Waiting outside a row of people, a doctor, a nurse a WAV abandoned sideways at the front and a quick thank you to the police officer.

Zack was still with us, oblivious to the drama his mum and sister were involved in but we all knew he would have found it extremely funny. That even now he was the epicentre of the dramatisation of our lives. 

You aren't failing him

A few days before Zack passed away the weather was glorious. Our carer was not at work as her partner had caught Covid to play it safe we decided it would be better if she remained at home too.

That week I had Zack all to myself. And I don't know why and I don't know what made me think like this, but in my heart I had a gut feeling that time was slipping away. 

For the first few days Zack seemed reasonably okay, to a point were we sat outside just the two of us and painted some pictures. We enjoyed the lovely sun and the birds singing, peacefully, happy in each others company. Below is the last picture I took of Zack. I knew. I knew where we were heading.

On Thursday Zack took a turn for the worse. He was working harder at his breathing, even with his oxygen set at 1% we were having to increase it just to keep his saturation levels up above 86. 

He began having repeated dystonic episodes. Periods of his body stiffening, like someone was forcing him to stretch out. It would torture him, plainly uncomfortable and we had no control over it. We took him into the local hospital. They said he had some fluid in his lungs gave him some medicine and sent him home. It was not our usual doctor who saw him and looking back now I think this was our biggest regret. We should have fought to get him something to make him more comfortable. What followed was a night trying to manage his dystonia on top of keeping his oxygen levels up. Sometimes he would settle, sometimes he would struggle. 

By the morning it was clear we needed help. We needed to get him to a hospice so we could begin palliative care. 

I have very mixed views of the NHS, very mixed views about doctors and community care. However in our darkness there were some shining lights who grabbed our hands and held us up. No, that's not quite right. From this point we were held up by an array of amazing people. 

I rang the community nursing team, I explained the situation and within thirty minutes I had two nurses with me. They got hold of Zack's doctor and they rang for an ambulance. 

Dan and I knew Zack was dying and one thing we had always discussed is that we did not want him to pass away in hospital. 

Hospitals are wonderful places, there in our hour of need, saving lives, fixing us, helping us. But hospitals also fail us, people make mistakes. And Zack's birth was one with a catalogue of errors and a birth forged in distress and pain and darkness. We didn't want his death, his end, his goodbye to be like that. We were clear that we wanted him to go to a hospice. 

Never have I asked for help. Never have I wanted someone to pick us up and just hold us there but now was the time. I needed to just be with Zack and I couldn't do it on my own. We couldn't do it on our own.  

Remember the Advanced Care Plans I talked about. We hadn't got to the point of completing them and we had only just had a referral put into the hospice so there were other bits of tape that had to be cut in order to get us where we needed to be. 

For now Zack was once more blue lighted into A and E. I eventually caught up with him in resus along with his doctor and Dan. I looked at him on the bed with his oxygen mask on and a cannular once more in his arm. Once more for the 50th time a needle stuck in him and I said "What are we doing? Why are we doing this to him?"

I distinctly remember saying those words and I hear them back in my head over and over again. I think why didn't I just shout save him, fight for him, do everything you can. But instead I looked at him and in my heart I knew to do this would be to prolong his suffering just so we could hold him with us for even longer. 

What followed was some very, very frank conversations. 

His lovely doctor who went above and beyond what any other doctor has done for us remained on ward and visible throughout the day. We were moved to a ward room and we met with a palliative care doctor from Clair House and a rapid response nurse from the same hospice. Zack slept comfortably on his bed complete with high flow oxygen, oblivious to the decisions being made about his care. 

They explained that they were going to do everything they could to get him over to Claire House in the morning. They weren't sure if he would make it until then, they weren't sure if he would pass away on route in the ambulance. But they would do their best to meet our wishes. 

I looked at the doctor when she asked if we had any questions and I said to her, I said to them all. "I feel like I am failing him. I feel like I am letting him down, giving up."

She looked at me and she said, "I've looked at his notes, I've spoken to his consultants and to his respiratory consultant. We all agree IV antibiotics will not work for him."  And as gently as she could she said "Zack has been actively dying, and you aren't failing him you are helping him you are doing what's right for him, you are not allowing him to suffer any further. To keep going, to keep treating him, would not be in is best interests." 

And there the truth lies. I didn't understand when the nurses hugged me and said you are being incredibly brave or when his doctor hugged me in resuss and told me the same thing. Now I understand I was doing the unthinkable, what no parent should ever have to do. I was calling it out, shouting it loud and clear, we can't save him. We have to let him go. 

And believe me I battled and still battle and most likely will battle with that for the rest of my life because ultimately I could not save him. Me, his mother, his protector, his voice, his advocate, the one person he could rely on totally and completely could not save him, instead I said no more and broke down in tears. 

And in that decision I made, we made. We freed Zack, free form the pain, the constant medical interventions, the difficulties. Free to finally be at peace. 

I think Zack new this, I think he knew were he was going and there was peace in that for him. We just didn't know how quickly that would happen.