©Barbara Evripidou/FirstAvenuePhotography.com

Jessie May nurse Vicky, wrote this diary entry to share at our Team Away Day earlier in the year and we subsequently shared it with supporters during our Christmas appeal:

Morning, before my first visit:

Before setting off for my first visit of the day I log onto my emails from home; the families I’m visiting today are known to me and Jessie May, so I don’t have loads of preparation to do. However, I do call the families I’m seeing today to check that the visit time still suits them – sometimes visits are subject to last-minute changes due to the instability of the child’s condition.

I also used this time to call another of our families whose child is currently in hospital. I want to check in with them to make sure they don’t need any supplies or help with anything.

We have to make sure that our time is best used to help the families achieve the most from their much needed 3 hours of care.     

If the children being visited today weren’t well known to Jessie May, this would be a good time to look ahead at their diagnosis and any relevant medical history that we, as nurses, should be aware of. This could include a seizure management plan, emergency care plans and drug charts; it is also useful to have a look at recent hospital admissions or anything from the wider medical team. Having this knowledge before we enter the home gives parents a sense of reassurance and confidence in our abilities, and it also highlights that we have an eye on things outside the Jessie May team. It is not always obvious, but we do work and communicate regularly with other professionals from other services.

My first visit of the day – Ariana, a little renal patient with a huge personality (travel time 45 mins):

I know Ariana well as I previously cared for her on the dialysis ward before I started working for Jessie May. She is a bubbly, determined and mobile child who enjoys getting stuck in to play and chatting about all thing’s princesses. Regardless of this, there are sadly many concerns living in hers and her family’s shoes.

My main concern with Ariana is that she regularly has a blood thinning drug as part of her dialysis treatment, therefore any trips or falls could be catastrophic; a result in a bump to the head could lead to a bleed. Despite this, she’s mobile and wants to play in all four corners of her house, top and bottom, up and down the stairs, like any child would.

She also has a vascular catheter which is a direct route into her heart and central blood system. This is her lifeline – she can only receive her dialysis this way, so we need to protect it.

Ariana also has an unsteady gate, so she’s wobbly, and has previously knocked her front teeth out by falling forward. Worryingly, she’s also a lot faster than she looks. And as we know, appearances can be deceiving.

I know it’s going to be a busy visit! 

I arrive and have a brief catchup with mum, Hayley, she knows me well and her free time is precious, so I have a quick tour of the new house (from Ariana – she’s proud to show off her new room and big garden), and then Hayley heads off to run errands and we begin baking. Ariana does tire quickly, so soon afterwards we’re sitting quietly reading and looking at stories, which is a good chance for us both to catch up on her home record book.

During the visit, I administer the medications she is due, and her special milk feeds through her gastrostomy (a tube which goes straight into her stomach), but first I assess the condition of the gastrostomy to make sure all is ok. This is also a good chance to look at Ariana’s tummy as she has several scars from other procedures and a failed transplant – it’s always good practice to have a little look at scar tissue and make sure there are no concerns. 

She receives her feed and, conscious that this could cause vomiting, we play a quiet game of dolls and dress ups while we wait for mum to come back, then hospital transport arrives to take them in for a long afternoon of dialysis.

The morning has flown by; thankfully it’s been a morning of fun and play without any hiccups.

However, since writing this, I have recently received a distressed call from mum to say that after a dialysis session, Ariana had two seizures. This is completely new for her; it hasn’t happened before and is obviously a really worrying time for mum. We will do all that we can to support them following this.

Despite how it looks, there is always a subconscious awareness that our Jessie May child is on a tightrope of stability.”