Being mum and my son’s care package manager: A delicate juggling act

June 2017 saw Elijah spend another stint in Bristol Children’s Hospital. This time, he had three consecutive episodes of unconsciousness during the morning of Saturday 3rd June.  After the third episode, I called 111 and we were quickly taken to hospital by ambulance.

For the previous three weeks, Elijah had seen the GP several times because of a build-up of skin problems. Elijah’s skin condition, texture and colour is always a good indicator of his health so I snapped a quick picture of him before we left home to show what his skin was like at that point.

Elijah

When the paramedic team arrived, they did their usual checks and noted that his temperature was 38.3 degrees so we gave him paracetamol. Elijah fell unconscious again during the ambulance ride. His temperature didn’t go down and his skin was red and inflamed by time we got to A&E. By taking pictures of those changes, I was able to give Elijah’s doctors an accurate understanding of what was occurring.

Once we arrived at the hospital, nurses, doctors and consultants from various departments got to work trying to diagnose what was wrong with Elijah. He was placed under the care of both the neurosurgery and high dependency teams who postulated that he might have chicken pox. However, this was later discounted.

We’re still not entirely sure what the problem was but the good news is that Elijah is back at home and his usual cheerful, cheeky self (with a bit of 11-year-old attitude thrown in just to keep me on my toes!).

My emotional state wasn’t great during this latest hospital stay as I don’t like not knowing what we’re dealing with or not having a plan of action. I felt stressed and vulnerable because we just knew that Elijah wasn’t well but couldn’t pinpoint the cause. Despite these frustrations, this latest hospital stay was a largely positive experience.

Elijah and Kaddy

Why?

As I’ve talked about in previous blogs, I’ve been Elijah’s Care Package Manager since 1st April 2015. Even at the best of times, this role requires a delicate juggling act between being Elijah’s mum and managing his wider care team.

In normal situations, when you have a poorly child, you would take time off to be with them in hospital but, as a Care Package Manager, it’s not really possible to take off that hat. Instead, I found myself in a rather dizzying cycle of mum-care package manager-mum-care package manager (and so on).

Although that was a problem on one hand, as I want nothing more than to ‘just’ be Elijah’s mum when he’s poorly, it also turned out to be something of an advantage.

During previous hospital stays, I have felt side-lined and shut out. There have been times when his team and I have been excluded from conversations concerning Elijah’s care and we’ve felt that his ongoing needs - relating, for example, to having Apert Syndrome or needing night-time therapeutic positioning - have been pushed to one side.

This latest stay was a completely different experience. The staff on Ward 33 High Dependency Unit at Bristol Children’s Hospital deserve a shout out. They were really respectful of Elijah’s team and more than willing to accommodate them, as well as to support Elijah’s ongoing needs.

They also actively involved me in the decision-making process. As Elijah’s Care Package Manager and mum, I felt that my voice was heard and I was better able to advocate on his behalf.

There was a great sense that the Neurosurgery team and staff on the ward were determined to get to the bottom of things and throw everything they had at getting Elijah home, safe and well. There seemed to be excellent communication across the different teams and departments, and that made my juggling act of mum vs. care package manager much easier to navigate.

This latest stay in hospital demonstrated clearly how much more positive and productive a joined-up approach can be. It also made me realise, once again, that parents can be unintentionally disempowered within a large organisation such as the NHS, often because of the size and complexity of the system. As Elijah’s Care Package Manager, I felt empowered.

Maybe it’s not just my role as Care Package Manager that made this stay easier. I have gained a huge amount of understanding over recent years about the questions doctors will ask and the tests they will need to run. Simple steps such as taking pictures of Elijah’s skin to show how it was changing in response to a high temperature or noting down details of each episode of unconsciousness made it easier for medical professionals to have a conversation with me.

Being Elijah’s Care Package Manager as well as his mum is a delicate tightrope to walk but, if this most recent hospital stay is anything to go by, it is a fantastic step towards ensuring Elijah receives the best support for his individual needs – not just his medical needs - at all times.

There was a wonderful recognition of him being an 11-year-old boy, which can so often be lost in the rhythms of hospital life. That can only be beneficial to Elijah.

Kaddy Thomas, September 2017

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