Following the diagnosis in October 2017, we did more reading up, sold the trampoline, ensured James didn’t take part in any high impact activities, spoke to James’ school and formed a plan that would limit his physical activities, and started hydro therapy sessions.
I think sometimes our brains, driving our thoughts and emotions have to go through some strange process to finally get to a point where we accept the reality of the situation. Even though we saw the MRI scan, had a conversation with the consultant, started physio, and we knew we had embarked on some sort of journey, we still had our heads slightly buried in the sand. Perhaps it’s clinging on to some daft hope that this isn’t really happening, and that it isn’t really as bad as we’re thinking/they are saying. And ‘it will all be ok’.
Towards the end of October James did seem to start hobbling a bit more but didn’t complain about being in pain. Friday 3rd November he was suddenly non weight bearing so we went to see his physiotherapist to get some crutches.
On my birthday the following Monday morning, we were taking our child to A&E, screaming in pain, like I’ve never heard him scream before. It was just awful. We couldn’t move him yet had to get him in the car and every tiny movement was agony for him. On hindsight of course, we probably should have called for an ambulance.
We got admitted to the children’s ward where we ended up staying the whole week, until Friday. James’ leg was put in traction and was bed bound for 4 days, in which time, they managed to ease the muscle spasms, and at least get him comfortable, and work on bringing the inflammation down. It was a tough week, sleep deprived, (me, not James!), and unbelievably worried about what it would all consequently mean.
James was also extremely anxious about anyone going anywhere near his leg, and moving it, having lost all confidence to try and put any weight on it. The Thursday evening we managed to get him out of the bed into a wheelchair. Friday, we practiced with the crutches, and also tried hydro therapy, but he wasn’t putting any weight on his right leg still. Saturday we went home, picking up a wheelchair from the British Red Cross on the way.
You can see in one of the scans the difference between his right (bad) and left (good) hips, and in the other scan the difference in his right hip between the x-ray taken in June and the one taken in November. The femural head of the left hip joint is nice and round, the femural head of the right hip joint is a more flattened shape with more black around it, where it has been collapsing.
It was at this point having had the week in hospital and seeing these pictures that the reality finally sunk in 100% and we now knew the extent of what we were dealing with. The experience of the pain, the immobility, the unknowing, the possiblity of future episodes, potential need for surgical intervention, the potential impact on James’ self-esteem, social impacts, school impact, just everything.
We went home on Saturday 11th, worried about how we would manage in the house. James had the choice of having his mattress downstairs or on the floor in his bedroom. (He has one of these mid height sleepers with a ladder). He chose his bedroom and bravely mangaged to slowly get himself up and down the stairs on his bottom. Another week of rest at home, and getting used to getting around on crutches. It took a few more weeks, but with each day he very slowly became more and more weight bearing. I think it was a combined physical and mental battle, and just gaining cconfidence that he could put weight on his leg without it being painful. With a phased return to school of half days and then full days but without after school club, a lot of juggling with work, and James just taking it easy, we made it to Christmas! Thankfully he was fully weight bearing again by this time and we all enjoyed a much needed chilled-out Christmas. I loved watching him merrily hum to himself as he helped to decorate the tree by our new cosy log burner, and knew that as we approached saying good-bye to 2017, we had to start 2018 with a fresh outlook.
Read the next blog to find out how things progress throughout 2018.
The Cookes Take on Perthes 