I am Not OK with this rollercoaster. I'd love an average day.
I cried today – in public and when I say in public, I mean in the school playground picking up Ben from school. Why the fuck am I crying? I am watching my absolute superhero of a son, with Duchenne, run across the playground, yes RUN across the playground to me, are they tears of joy? No, there’s a deep-seated sadness at seeing him run, knowing that he is reaching an age where soon running will not be a right for him anymore but rather a privilege.
Privilege – (noun): a special right, advantage, or immunity granted or available only to a particular person or group
That’s why I am crying, not because I am happy about the fact that at the age of nearly 8 my son can still run, but knowing that it will be something taken from him in the future, something that should NEVER be taken from anyone.
BUT, I should be crying out of happiness that he IS running, WTF is wrong with me? I have always celebrated what Ben CAN do right now and tried not to think about the future. Why is my frame of mind so backward?
Let’s rewind and see why this could be…. Being the parent of a boy with Duchenne is like being on a massive rollercoaster. But I suppose just being a parent is like being on a rollercoaster, I just think that I have more loop-the-loops, corkscrews and stomach plunging drops than the ‘average’ parent. Hey! I am not calling all parents average, it’s their circumstances of not having a battle at every turn, that’s the average part.
The past few weeks have been challenging to say the least, it all started on Good Friday when Ben fell in the garden, well he tripped over his brother and landed directly on his right elbow, his reaction to the fall was so different to any other time he has fallen that I knew immediately something serious was up. After some hugs, ice and Calpol there was no respite in the pain he was experiencing so it was off to A&E, at 7pm on a Bank Holiday Friday (why do these things always happen on weekends or Bank Holidays?).
Prior to leaving for the hospital there were a flurry of emails sent to his care team (Neurologist, Paediatrician, Physio, Family Advisor) and we were met with an Out of Office for each and every one. I cast my mind back to all the webinars I had attended, literature I had read and conversations I had had, preparing myself for this situation – bits and pieces of information came back, in fits and starts. I felt totally unprepared for this scenario despite all the preparation I had made. The questions keep flooding my mind (without a clear answer for any of them):
· Do I give him a hydrocortisone injection to prevent Adrenal Crisis?
· What symptoms do I need to be looking out for relating to Fat Embolism Syndrome?
· Do I need to give him a booster dose of steroids?
· If it’s broken, do we cast it? No, no casts, has to be set internally, surgery only, is that right?
Anyway, off to A&E – upon arrival it was standing room only, that’s fine we have Open Access so there will be no wait and we will be seen quickly.
40 minutes later we are called in for triage assessment by the nurse. I explain the situation, it’s been 1.5 hours since he had Calpol, he has Duchenne (blank stare from Nurse), he’s a long-term steroid user, so need to be aware of adrenal crisis and fat embolism syndrome (blank stare) the nurse asks, ‘what are the symptoms?’. At this point I am concerned about the level of care we will receive. She carries out a physical examination, but has not taken his temperature or blood pressure, and asks us to wait there a moment. She returns with pain relief and when I remind her he had Calpol 1.5 hours ago I am met with a disdainful look and a, ‘don’t worry, it’s Nurofen’. Ben cannot take Nurofen, anyone on steroids knows that they should not be given anti-inflammatories.
The nurse advises we will be going to Minor Injuries as the wait for X-Rays in A&E is 3 hours. And then it would be a further wait to see a paediatrician. As I am sitting with Ben, I hear a call from round the corner, ‘excuse me Dad, what does he have again?’ I look over and see that it was directed at me, I walk over and say, he has Duchenne Muscular Dystrophy, giving it a moment and seeing no action on the keyboard in front of the nurse, I ask her, ‘would you like me to spell that for you?’ with an answer in the affirmative. It drives home to me how rare Ben’s condition is.
Following the x-rays and there being no definitive diagnosis of a fracture due to the swelling, we were sent home with Ben in a sling and informed we would be contacted for the fracture clinic the following Thursday, a full week later. In addition, I had to ask for Ben’s x-rays and reports to be sent to his care team as the 2 NHS Trust IT systems do not automatically update his information, it was INCREDIBLY frustrating.
As Ben’s care team were all uncontactable and I could not for the life of me remember the correct thing to do with stress dosing of steroids, I muddled through, boosted his dose and wrapped him in cotton wool.
A flurry of calls and emails ensued on the Tuesday after Easter asking for clarity on stress dosing and a course of treatment. I had stress dosed incorrectly, but no damage done. Treatment - wait, go to the fracture clinic on the Thursday and see what they say then. More frustration, am I doing the right thing? Is this delay going to cause more damage? Will he need surgery? Can we cast it or not? So many questions and no answers.
The fracture clinic on the Thursday was fine, the Orthopaedic registrar was kind and friendly but was not a Paediatric Orthopaedic registrar and had little knowledge of Duchenne but had taken the time to read Ben’s file. Unfortunately, there was no conclusive proof of a fracture according to the Radiologist’s report, the course of treatment was – do nothing, keep it in a sling do some exercises and come back in 2 weeks, they would decide then if they needed to do something different.
Roll on the Saturday – a chilled afternoon at home, Ben walks out of the playroom slips on the lid of a game box on the floor and yes you guessed it, lands directly on the same elbow. The pain is clearly excruciating for him, so yet again it’s off to A&E. Another x-ray, another evening of explaining Duchenne, steroid use, bone density, Adrenal Crisis etc... It’s exhausting. We are sent home with another visit to the fracture clinic booked for the following Thursday.
This time at the fracture clinic we saw a different Orthopaedic registrar, and he stated – I disagree with the Radiologists Report, I believe there is a fracture, and I can see it on both sets of x-rays. We can cast his arm or if he is comfortable, leave it in a sling. Come back in 2 weeks for another assessment.
Now what do I do? Now what is the right course of treatment? Have I done the wrong thing all along?
I contact his Neurologist, asking for some clarity, who do I believe, what should I be doing? She was great, spoke to all involved and ensured that at the next fracture clinic, Ben would be see by the Paediatric Orthopaedic Consultant. Which he was, on the following Thursday. It was the first time I felt I received clear answers:
- Yes, it is fractured
- It is a stable buckle fracture, so no surgery is required
- You have been doing the right thing by keeping it immobilised in the sling
- We can cast it, but would not recommend it because of Ben’s Duchenne and the sling is sufficient
- Keep the sling on for 2 more weeks
- Come back in 3 weeks for a final review before discharge
To add to this, Ben has outgrown his night splints, vital for maintaining his mobility, so we had an appointment between all the visits to A&E and Fracture Clinics to cast him for new splints. Fortunately, the Orthotist was able adjust his old ones to fit temporarily while the new ones are made, but due to COVID they now take 5-6 weeks to make rather than 3-4.
To summarise, since Good Friday Ben and I have had:
- 2 x A&E visits
- 3 x Fracture Clinic visits
- 1 x Orthotics clinic visit
If you are still with me after all of that, then so much more has been happening. I had Ben’s Annual EHCP (Education and Health Care Plan) review, 2 hours of negotiating the level of support and outcomes Ben will given and targets for him to achieve over the next year and beyond. It was very positive for the most, but it also reminds you how differently Ben learns and that Duchenne is more than just weak muscles!
There was also Ben’s brother Zak’s 4th birthday in the middle of this. Trying to balance Ben’s needs without forgetting about his sibling, who is a force of nature, can be difficult and is another non-average piece of my life.
On top of all of this I have spent the last 7 months trying to find 2 builders to provide a quote for the adaptation and extension to our house to make it accessible for Ben and create our forever home, JUST 2 QUOTES. In 7 months, I have received 1 quote and not heard back from over 10 other builders. It’s VERY stressful as it means the work will now more than likely be pushed out to 2022.
It’s been hard, it is hard, I am not doing good. I am sometimes but deep down I just want something to happen without a massive fucking battle at every turn. Ben has been dealt the cruellest hand with Duchenne, a huge battle in itself. I want Ben to have the best life possible, as all parents do for their children, I’d just like to have an average day sometime without a battle or a worry. Throw me a fricking bone!
P.S. Did I mention this all happened while holding down a job?