Our trip to Perth yesterday didn’t have the greatest outcome.
It was a big day, to Perth and back with Joshua. Arriving home, the very sight of my family all waiting, searching my face for a clue as to how it all went, I burst into tears. Big silent group hugs.
I am saddened that this little kid has it so tough. Of course we try our hardest to keep him as healthy and happy as possible, but some things are just out of our control.
Seriously I thought we would go to this appointment, they would look at his feet, um and arr, then tell me to continue with his AFO’s (ankle/foot orthosis) nothing much we can do, blah blah… and maybe update the AFO’s. Fifteen minutes max I thought. The worst I thought, they may suggest surgery to correct them, but highly doubted it as his feet are the way they are because of the muscle tone, not skeletal.
I thought 15 minutes. That was wrong to start with. We were there for more than 3 hours.
To start with the first Dr wasn’t even really concerned with his feet. This confused me as this was the reason we were there. he looked him over, checking his feet, his ankles, his knees, his legs, his hips. He asked questions about Joshua’s lifestyle. He asked “how he ambulated” and I didn’t know what that meant. What a loser I am. He meant how does he walk. Well… he doesn’t. Never has. He can stand with AFO’s with assistance, but not much else. We don’t stand him, he is just too heavy to support. Mostly he was concerned about his hips. I was unperturbed as the thought never crossed my mind before, but he sent Joshua off for an xray. Not the feet, the hips.
So off we went. In/out of the chair, on the bed, dacks off again. I lost count of how many times he was moved and dacked. No wonder I can hardly walk myself today. Luckily Rachel is on today and I am belted up with my brace, hobbling around.
By the end of the day we were in a room with 4 Doctors. They were nice, considerate people. The boss Doctor was kind to Joshua, and explained to me what the problems are and how we will need to deal with them. He used many medical terms and large words, then he explained them to me. I saw the x-rays and I understood what they had to do. I listened to why we needed to correct these issues and I realised the pain involved and the recovery time.
His feet at the least of his worries right now, but they will correct them at the same time. His hips are the main concern and almost dislocated already due to his immobility. This is very common in patients like Josh. When this happens he will most certainly have pain for the rest of his life and will not be able to sit in his chair anymore, and would be bedridden. So there is urgency to have this done soon before it dislocates completely, making it near impossible to fix. We are booked for January, he will be in hospital for 2 weeks, with a recovery time of months.
He will be operated on at 6 sites.
- Both feet will have tendons cut, then he will have below knee plaster casts on for 6 weeks.
- Both inner thigh tendons will be divided, then wraps and wedges will be used for 6 weeks.
- Both hips will be de-rotated, to do this they need to cut the upper thigh bones and remove a wedge of bone, turning it, and pins, plates and screws are inserted to hold it in place. The bone that was cut will heal and fill itself with new bone over 6 weeks.
See why I cried?