Don’t Take The Light Away

PICU

Its short for Paediatric Intensive Care Unit

I suppose it should really be short for, ‘your child is fighting for his life’. For many parents to describe it as a nightmare would be insulting and patronising so I won’t go there, but I will tell you that the parents I crossed paths with while there will have an indent on my life forever. I may not know them well but I watched them fight for their children.

I don’t know if you know this or not but right now while we sit blissfully on our sofas (myself included) a child will be fighting for their life and a parent will be watching there every breath. I know this because I’ve watched them. It’s not a nightmare, its real life and I think of them every day.

However, we can’t forget that there are also success stories, Nathanael was amazing (maybe too amazing as we came to realise). His vitals and progress or lack of it as the case was, seemed satisfactory so after only one night we got shipped back to Barbour Ward.

In a delight and also with a heavy guilt I happily wheeled my baby out of there and down the corridor. I knew as I’ve experienced it that there where so many parents who yearned for the day that they would be pushing their child out like us and it tore my heart. Conversation and the fact I was pushing along a three-legged trolley that was vital to Nate kept my legs strong and my chin from wobbling.

Nate lay on the bed in the ward lifeless, in fact I could see him so clearly breath yet he hadn’t moved and had barely opened his eyes for two days. Surely it can’t be normal? He was attached to so many machines and in his spine was the epidural. It scared me the most. What if he wasn’t moving because he was paralysed?

My heart was ruling my head and it’s hard for me even to write but I actually wondered if I would ever even hold him again? What if I hurt him? What if I tore open his wound? Or accidentally ripped out his epidural? The questions where endless.

And then he did it, he opened his eyes for a few moments and I whispered to him “Hi my baby, I’ve been waiting for you” and he smiled. He smiled at me.

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Why isn’t he moving? We questioned our assigned nurse, now bare in mind we had spent 2 days in PICU surely if something was wrong they would have picked it up, no? Unfortunately to cut a long story sort our amazing nurse realised that the epidural was working up to his ears rather than his nipples. I recall the anaesthetist rhyming off the risks before surgery and one of them being the damage that could be inflicted on his lungs if this happened.

An anaesthetist came to rectify the problem, but not only did she do that but she also apologised. I watched my beautiful husband crumble. She spoke with the most sincerity and in the most beautiful compassionate tone. It wasn’t her fault but she was part of a team and here she was in front of us apologising for our heart ache and expressing her concern for worrying us. The tears kept rolling down Pauls face, he needs a hard approach, when someone shows that they care and are worried I know he just can’t take it.

Sometimes I’m the strong one, not often, but on this occasion I was. He was okay and they were going to fix this.

That night I hardly slept, Nate still hadn’t moved but had started to flutter his eyes every so often. My questions still flooded my brain, would I ever get to hold him again?, but did I want to hold him? After all, what if I hurt him?

I urned to though, and I’m pretty sure in a gentle way I absolutely tortured the staff. I was breastfeeding him and aside from the fact my boobs where bursting with milk, I just needed my baby to be in my arms and to hold him like I always did. I hadn’t held him in 3days and my body was missing a warmth every mother can relate to.

One of the nurses passed him out to me and here I am, I think this picture sums up a thousand words. Tears spontaneously rolled down my cheeks, Paul rarely take photos of me and the kids but I love him for this one. I had my baby and I felt thankful to have him in my arms again, I had an appreciation for being the lucky one who did.

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I hadn’t eaten and I had hardly slept, to top it off I was getting one hell of a flu. Nate was at risk of infection and I agonised over whether me being with him was benefiting him or hindering him. He was neutropenic and I could potentially have been jeopardising his health. I had lots of milk pumped so Paul convinced me home was the safest place for me to be. Dad picked me up and took me home, I didn’t even cry on the way home. I was broken but sometimes when you know grandparents are suffering you need to contain yourself and keep it together.

Our parents have suffered so much from this pain and Paul and I try hard not to add to it. We worry about how this effects them, after all what grandparent thinks they are going to hit retirement and instead of joyful play days with your grandchild you are going to spend your days worrying if you are going to outlive them.

A harsh statement but a reality I know our parents where living. The word cancer does that to you and it took me a long time to even be able to use that word.

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The next few days Nate developed a chest infection, it was worrying but he was progressing well. We continued to move him and in time his epidural was removed along with his feeding tube and IV pain relief.

Paul left on the Thursday night and we set a goal that if we could attempt to get Nate to sit up by Sunday we would be on the home straight, breaking out of the prison hospital had become. On the Friday morning after a full night’s sleep Nathanael in true superstar style woke with a smile, this is it I thought I’m here by myself and I’ve got this. I lifted him up to play with his toys. He could sit, I had spent so long agonising over how his body would adapt, after all his tumour had engulfed his whole torso, but their he was by breakfast time sitting playing with his toys. We could go home.

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We were on cloud nine. We felt like we’d got through the worst and I could physically see the light at the end of the tunnel. We’d always prepared for 4 weeks of chemo before and 4 weeks of chemo after. I knew radiotherapy may be required but nothing mattered now Nate was sitting, eating and smiling at us. We had survived surgery and I missed Alfie with every mothering bone I had.

Our consultant came to visit us before we left. Then he did it, he started the sentence with “I need to be realistic with you and I need to prepare you for a longer treatment time”

The tunnel shut, he closed it with that sentence. The light I could touch was gone.

Nate surgery

 

3 thoughts on “Don’t Take The Light Away

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