October 10th - 12th 2019

October 10^th 2019

No change today, Martin was staying on the ventilator and would be reviewed tomorrow.  I had been given a booklet to add some things to for Martin (or us) to read back on, I was just writing that his sister in law had just put holy water on his forehead and how he’d be laughing at her, when a hospital chaplain came up beside me and introduced himself. When he went, I was mortified, timing couldn’t have been worse it’s like he was there to guilt me for laughing about the holy water.  

It was a day spent sitting with and talking to Martin and waiting... so much waiting.

October 11^th 2019

I went to ICU for visiting, Martin was not in his bay, he had been taken for a scan.

As soon as he came back from his scan, I was taken to a room with a consultant, I knew this did not mean positive news.  I was told that he now had full brain damage, there was nothing they could do for him now. I remember the consultant sitting opposite me, I was so uncomfortable, although this is her job day in day out, she was obviously uncomfortable too, I had to get out of the room so excused myself, think she might have been relieved at me leaving first.  

I was later told that the Palliative care team would take over his care to allow him to pass away pain free, and with dignity, he would come off the sedation but stay on the ventilator and under constant review.  I was living an actual nightmare, everything seemed so surreal, I found my breathing hard sometimes, like I had a huge knot in my chest.  We did not know how much time he would have left so arranged to have Kiera collected from school and brought to the hospital with Jamie and Ethan, she had been trying to do all the normal things, Ethan wasn’t able to face school at all.  I had to ask the nurse when they arrived, how on earth do I tell them that their dad is going to die.  We went through how I could say it, she offered to tell them.  I took the kids into a room with the nurse waiting outside in case I needed her, and then I did the hardest thing I've ever had to do in my entire life and told them that their dad could not survive what has happened to him.  

Martin was moved into a side room of ICU where we could come and be with him outside of visiting hours, we were encouraged to spend as much time with him as we wanted.  Taran was also allowed to visit now, I did not know if it would be a good or bad thing for an 8-year-old to see. I asked for various people’s opinions.  I had a chat with the night shift leader about it, and she told me that young children seem to cope very well, they are used to technology, so the equipment doesn’t appear to bother them.  I decided I would ask him what he wanted to do.  Tomorrow was Saturday so he wouldn’t be in school and would have to come to the hospital at some point anyway.

Jamie decided he was going to stay at the accommodation with me, my sister had stayed with me before this, but Jamie felt he needed to be here, I am sure the others wanted to as well, but I only had 2 beds in my room.  We stayed up until the early hours in Martin’s room from then on, we played music in his room, went through his Spotify playlist, which made it very hard to decide what to play him, he had a lot of playlists.  We played some of the Guardians of the Galaxy soundtrack, some Prince, he had a playlist called ‘Columbian Powder’ and even one for Jazz.  I told the nurses they could play whatever they wanted when we weren't there as he liked most music.

October 12^th 2019

I had the question about organ donation today, this was something I knew I would like to happen but also asked the kids about it, oddly enough Kiera had just been reading a fictional book about the subject, we all decided it’s what we all wanted, and sure Martin wanted too.  This is something I would suggest every family discuss, so wishes are 100 percent clear and known, this and funerals.  It’s not a nice topic, but it’s important for those left to deal with what comes after to know that they are doing the right thing, don’t wait until you get old, or ill, this may never happen.

As we had decided that organ donation was what was wanted, we were told that Martin couldn’t stay on the ventilator indefinitely, his body was already starting to shut down and the longer he was on the ventilator the more unlikely organ donation could be possible.  We agreed for the transplant team to come in and start doing what they needed to.

Taran came to the hospital, I told him about the equipment that was being used, and what he would see, smell, hear and asked him if he’d like to see his dad.  He wanted to.  I did not know what to expect of his reaction, but it was not what it was.  He was very curious, he spoke to him, he walked all around his bed taking in everything that was going on, he then started making comparisons and making us laugh.  He said the ventilator made him sound like Darth Vader but with a little squeak on the end, the atmosphere in the room changed that day, there was laughter, the nurse commented on him being a little fire rocket and she told me that she loved how I answered all his questions honestly in a way he could understand.  The only question I could not answer was when he asked me when his dad was going to wake up.  I hadn’t told Taran yet that Martin was dying.  I wanted this time with him not to be sad.  The nurse said when he asked that question she had to leave the room, up till now she had been extemely professional and had told me previously she puts up a barrier at work, she told me she was finding that hard to do with us.    

Taran had a hamster that died in the summer (this is relevant) just before we went on holiday, it was poorly and we had taken him to the vets where he had to be put to sleep.  I had explained to Taran why this had to be done, he was too ill and needed the pain to stop.  He was upset but understood.  This comparison was made while Taran was asking about the ventilator.  He said ‘So if this machine is making dad breathe, if it is stopped and he can’t breathe by himself it will have to go back on, and he can’t live like that so we’d have to put him to sleep’.  I laughed out loud, I then cried, he got it, but he didn’t know.  He became concerned ‘Mum are you crying?’  My mum told him he was so funny he made me cry with laughter.

 He found out about all the waiting around, and was very bored and restless in between being with his dad as some of the cares Martin was receiving were done without us there for his privacy and dignity and probably wouldn't have been very nice for us to see. I asked him if he wanted to come back to visit tomorrow, he said no as it was boring, he would rather go and play with his cousin for the day.  Fair enough.

It was suggested to me to take a picture of Taran holding Martin's hand, so I did.  As Taran left, he asked why I was staying behind again and that he just wanted things to go back to normal.  He didn’t know what the new normal was going to be.