It’s a turbulent, stressful time living in a hospital. It’s even worse when that hospital is on the other side of the country and everyone talks funny (yes you Southern folk – you sound funny, even compared to Scousers!) It’s hard to be completely comfortable when everyone sounds like Danny Dyer. As humans we are always scared of the unknown, some people find it exciting but not me, I like what I know and I know what I like. Isla being in Alder Hey isn’t ideal, it’s still a fair way from home, but it’s familiar; it’s safe. We know the staff, the staff know us and more importantly they know Isla. This is all new and it’s way out of the comfort zone.
For years Isla has been under the same consultant and we’ve seen Isla’s ecg at its best and we’ve been able to keep her safe and out of hospital. Granted this still hasn’t always been easy and there’s been ups and downs but we’ve had a good little system going and we know what we have to do to correct any naughtiness. We knew it wouldn’t always be sustainable and at some point something would have to give, I just didn’t think that it would be yet.
The day I had to perform CPR on Isla is still fresh in my mind. I still see her lying dead on the floor. I’m mentally scarred by it and I’m seeking help to deal with it. I never want to have to go through that again. I’ve never really experienced flashbacks until now but the mind can really do a number of you when you stop for a minute. Although I didn’t want to reach the point of an ICD while Isla was this small it will be a weight off my shoulders and I think I’ll eventually feel better knowing that Isla is filled with technology that will give us warnings of cardiac events but also shock her out of dangerous rhythms when necessary. The stress Isla has put me under has caused me palpitations so I might see if we can get a 2-4-1 deal and I’ll have one too.
I’m grateful that we are now under a team of specialists who are treating Isla like the scary, but very cute little girl she is. She’s on a cardiac intensive care unit, we’re told the safest place she could be. So why don’t I feel it?
I think any parent is the same when it comes to the ferocity we feel if we see our child threatened. It’s primal. This new team who reduced Isla’s meds down and caused her to have runs of Torsades put Isla in danger (in my head) and I was ready to discharge her, pour a bottle of Mexiletine on her face and drive her all the way home (probably bare footed and carrying a Toblerone, ah-ha!). As much as I understood the plan by the team here, it terrified me, as ultimately, it’s us who are the ones watching the screen while the doctors swan about being important, or working, whatever! They tell you not to watch the screen, it’s for the nurses; I challenge anyone not to glance at their child’s screen when it starts binging. It’s the car crash scenario; people slow down and rubber neck, you know you shouldn’t, but you always look. It’s the same with the cardiac monitor. You know it’s going to go wrong, so you watch, you just do!
Being on ICU is tough. It’s intense. However,
it’s also very difficult to when we’ve been on ICU before. At Great Ormond Street there’s a Neonatal ICU, a Paediatric ICU and a Cardiac ICU. Isla is on Cardiac ICU. Here they see all sorts of weird and wonderful rhythms and heart conditions. So I really should be confident when they say, ‘Isla will be safe here!’ When we’ve been on ICU previously, the criteria was pretty much ‘you have to be on a ventilator’; as soon as you’re off it you move to HDU. On CICU Isla can walk around and play as long as she’s attached to ‘telemetry’ (their fancy word for ecg monitoring). It’s amazing that she gets the close 1-1 care and has a team around her who monitor and review her rhythm basically 24 hours a day. It’s the first time that I’ve ever really felt her condition has been taken seriously and respected for the severity it carries. I still feel like she’s a fraud running around an ICU, but she’s not. She died 2 weeks ago. She could go again any time and they recognise this and are doing things to try and make her more stable from both a cardiac point of view and quality of life.
It’s taking me a lot to trust them but they are winning me over. I don’t think we got off on the right foot when I saw their initial plan go wrong. They said they’d keep her safe and that didn’t happen. That destroyed my trust and I lost faith in them. Faith is a very difficult concept for me. When I fill in forms about religion or faith I usually go with Jedi. I’m Christened, as is Isla, but I do struggle with the religion for a number of reasons. For me seeing is believing. I need to see something work or I need to have chosen that path myself having weighed up all the options. I wouldn’t jump out of a plane with a new style parachute if I hadn’t seen it be tested or reassured myself about the science behind it. Up until now I only really trusted myself and even that was wavering. To trust someone new is a big thing. Even if he does look a bit like a Jedi Knight – Obi-Wan Kenobi. I mean the Ewan McGregor incarnation from the episode 3.
Isla’s consultant does really look like him and even though he’s a specialist in his field, and potentially a Jedi (who I do have faith in, even after The Last Jedi), I can’t trust him until I’ve seen his plan working. If she has another wobble I can see myself repeating Obi-Wan’s words back at him, “Luke! (oh yes, Star Wars fans, the consultant is even called Luke, I know it’s not Ben but it’s still Star Warsy… edit… he’s last name is even STARling… whoa!) You were the chosen one! It was said that you would… bring balance to the Bear, not leave her in darkness!”
I really respect people who find strength in religion and have such strong faith, no matter what the religion, and I wish I had more faith when it comes to a whole host of things.
One of my favourite quotes of all time is from Coach Carter. It’s based on a poem by Marianne Williamson. It even encapsulates the light and dark theme that I’ve just waffled on about.
Our Deepest Fear
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”
In principle, for life I love this quote. It is peoples’ fear that holds them back. People worry about how they are perceived and so may not always show themselves off to their full potential. I’ve seen it with children while teaching. You know some children know the answer, but they won’t put their hand up and tell you for fear of embarrassment. They don’t want to look like a ‘geek’, they shrink into the crowd and don’t shine or show off to the best of their ability. It’s infectious. The fear of failure is our deepest fear. It’s also mine, but it’s now out of my control. In a way I am grateful for that. I’m Isla’s dad; I’m not her doctor. I’ve felt the pressure of being both for nearly 3 years. I think you all know what my deepest fear is: My deepest fear is that when it comes down to it, for Isla, I will be inadequate, I won’t be enough to keep her safe. My fear is that I’m not powerful beyond measure. I suppose now I have to trust that the team at GOSH will shine. They are amongst the best of the best. They got there by answering questions in class and rising above the rest. I need to trust them and have faith in them. A test of faith is one I’m sure everyone reading this will have faced. The next few weeks will be tough so whether you believe in God, Allah, Ganesh, Thor, Yoda, Jehovah, Brian (he’s not the Messiah, he’s a very naughty boy)… each to your own… please send some positive thoughts Isla’s way and let her team shine!