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.