Discussions about Advanced Care Plans

I walked into the room where my son lay, he was still on the transfer trolley. He was asleep, unaware of what was going on around him. They transferred him onto the bed, took him off the monitors and placed him on oxygen. 

We thanked the ambulance staff, the anaesthatist and then we were left alone with the palliative care doctor, the nurses and a couple of staff members at Claire House. 

I stroked Zack's head, whispered how much I loved him, kissed his face. Scarlett, and (I will write about sibling grief at a later stage) hugged him, upset and afraid. She later told me that she told him she wasn't going to leave him and she would stay with him until the end. Again, I can't cover this here, but I need to say the bravery that it took for this little girl to go through what she did still takes my breath away.

Afraid. Frightened. Worried. Terrified. Panicked. Anxious. These adjectives are only a fraction of an expression about how we felt during the period of time that Zack deteriorated. It completely knocked us off our feet up when we accepted he was dying. I think the words a doctor used were "he is actively dying and has been for some time." 

I'll do my best to try and be clear about my thought process. As Zack got sicker and needed longer hospitalisations, it slowly began to sink in that one day and at this point we didn't know it would be so quick, but one day he would leave us. We would have to make decisions about what care we wanted for him during the end of his life. 

When you come to this stage of caring for someone with complex needs there begins discussions about Advance Care Plans. 

I had never even considered an Advance Care Plan for Zack, occasionally I would read on forums for parents of special needs children that they had them in place including DNRs (a do not resuscitate order). I would think how could you ever get to that point, why would you choose to do that?  But that is where Zack's journey took us. And thinking back now, all the ups and downs of his life, all the hardships and difficulties were nothing compared to this last part of his time here on earth. 

We began to consider an ACP during one hospital admittance, when it was suggested by a doctor that maybe we should begin to discuss this with his consultant. We met with a community nurse not long after who kindly brought round the form that we would need to complete so that we may look at the questions before we arrange a meeting with his consultant to discuss. 

The ACP covers our wishes in the care and treatment for Zack. It can be changed at any time and is usually written with guidance and help from other professionals. Effectively it is specifically asking as Zack was nearing end of life what care we wish to have provided for him. I won't go into all the ins and outs as we never got chance to complete the form. But there were areas covered such as how much intervention we would want for Zack, whether we would want him to be put on a ventilator, whether we would want him resuscitated. What was important to Zack, what would we like him to be able to do, where would we want him to be looked after during end of life. Even his funeral. I know, as if, as a parent you should be thinking about this, but realistically and pragmatically for some it helps for other parents it doesn't.

Our thought was that whatever happened the most important thing for Zack was his quality of life. If he wasn't going to improve by medical intervention, if we were keeping him alive artificially then it would only be for our benefit not for his. 

As I write this I still can't fathom how we even got to this point, how we were able to make these choices for him. I feel incredible guilt that I let him down, that there could have been more I could have done. Yet as I look back and remember the number of times his body was pumped full of IV antibiotics, his stays in hospital, the need for oxygen. How he struggled through the last months, each time getting a little worse. I knew I couldn't let him down any further, we had to let him go. I look at those words, let him go. How could I? How did we? 

All the doctors said that there was no more that could be done for him. But was there? If I am honest I feel that I let him down. People will tell me we didn't, doctors tell me we did everything we could he just couldn't battle any more. I know logically what they say is true, but as his mother, I will always carry the feeling that I didn't save my baby, I didn't protect him. Perhaps that guilt will always stay with me. 

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. 

It would be a good idea for Zack and for myself to have a bit of separation

Zack had his physio this week. He did very well, good head lifting during tummy time and he even moved his head over to the left to look in the mirror. He tends to like his head on the right side so we are trying to encourage movements to all sides including alignment in the centre. He also tried to throw himself over from his front to his side. He would throw his head back a bit to try and shift his weight. His physio was impressed as he was doing this of his own accord rather than due to a muscle spasm.


The Pants also got to have a go of the physio's gym ball. She shifted his weight from right to left whilst he was on it to get him used to correcting his balance. I told her we have one of these gym ball things (bought when I thought it would be of valuable use in my fitness regime that lasted all of two days). She advised me to give it a try and perhaps just steady it against the couch. Hmmmm, little did she know that previously we had been rolling Zack all around on the gym ball. Whaaaaaat? He likes it.




Today we went to visit Zoe's Place in Liverpool. It is a hospice for children with life-limiting conditions as well as complex disabilities. They offer parents respite care for their children aged from birth to five years.


When you hear the word hospice you imagine a sad place with sick children but it isn't like that. They have a fantastic facility that is open 24-7. It has two little bedrooms each with three cots, a fantastic sensory room, a hydrotherapy pool, a massive play room and it's all set within quiet, beautiful grounds.  


I have been thinking of late that it would be a good idea for Zack and for myself to have a bit of separation. It won't be long before he will be able to go to a nursery class a couple of afternoons a week and at the moment I am very nervous about leaving him with anyone other than family. But I know it will do him and myself good to get used to being in situations without each other. I mean lots of people put their children in to nurseries. But I feel so guilty about leaving him, I guess I am extremely protective of him because I see the barriers and difficulties that his disabilities can create. 


Sometimes I feel that I am the only person who understands they way he communicates. I suppose I am though because I spend so much time with him. However, I have to let him try to experience new things without me, perhaps this is another way that may help in his development. 


They gave me an information pack to complete. Effectively it is like a little handbook for Zack. It lists all his likes and dislikes, his way of communicating, his condition, his medications, his typical day. This way they can put together a care assessment for him so that when he does go and spend time there they know exactly what he needs. Every child has a one to one person in the day and at night time the ratio is one person to two babies. I don't think I could ever leave him there overnight. For now I think I will try an afternoon but even the very thought of it makes me feel quite sick.