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Henry’s story part three – Sarah and Henry’s post-surgery diary

Henry wearing the Ilizarov frame post-operationThe latest installment of Henry’s story comes in a diary format, as mum Sarah shares her thoughts and feelings – with some input from Henry! – during the week following Henry’s operation to have an Ilizarov frame fitted for his bilateral talipes.

Operation Day – 10.30am

Henry went down for his operation at 9.10am. He was getting a bit nervous – but not as nervous as me! We were told the operation would take approximately 3 and a half hours. While he was in theatre I went and picked up the bags from the car – entertainment bag for Henry with stuff for him to do and my bags – feel like we’re moving in! Now just sitting on the ward waiting – never known time to go so slow…

Operation Day – 3pm

Henry was sleepy after his operation but the epidural seems to be controlling his pain. Although we’d had preparation and seen the frame before, I think we were all shocked at the size – seems bigger than I’d imagined it would be. Henry was concerned that his left leg has been bandaged – had to explain that his left leg was fine and that it was bandaged so he doesn’t hurt his left leg with the frame on the right leg.

Day 1 – Post Op

Not much sleep last night – the nurse was checking Henry’s observations every hour during the night. Henry is a bit itchy today due to the medication he’s on and has had some pain in his foot, so the epidural has been increased and getting regular paracetamol and ibuprofen. He was getting frustrated last night and wanted me to get Mr Nayagam to take the frame off but I guess that’s to be expected – hard to hear though. I know this will all be worth it but all seeming a bit much right now.

Day 1 – Post Op (Henry’s thoughts)

I feel tired. The frame is annoying and sore and the frame is heavier than I thought it would be. One of the nurses kept waking me up every hour in the night to take my blood pressure, which is very tight on my arm. I’ve had lots of medicines and I like messing with the remote control on my bed. I like the star and space ship stickers on the window of my room and the curtain has got animals on. My mum said I was very brave when I had my operation. The TV in my room doesn’t work but I can watch films on mummy’s computer.

Day 3 – Post Op

Things seem to have settled down and with his epidural falling out and then the cannula, Henry is now on oral pain relief only. He seems to have accepted the frame now and is able to move around quite well with the frame now. We actually ventured off the ward today – first trip in the wheelchair – to the physio department where he had a go of hopping on his good foot supported by parallel bars and had a go in a walking frame. From where he was two days ago it seems that he has made amazing progress – very proud!!

Day 3 – Post Op (Henry’s thoughts)

The last time I wrote the story I hurted quite a lot but today I feel well better. The frame is not as annoying. Today I went in the wheelchair to Physio. I enjoyed physio and had a go on the bars in the Physio Dept and had a go using a walking frame. I oopsy by mistake stood on my frame getting out of the wheelchair and it really hurt.

Day 6 – Post Op

With any luck going home today!! Henry is really pleased as it’s his birthday on Tuesday and he didn’t want to be in hospital on his birthday. I’m pleased for that reason too but more so as I think we’ll both get more sleep at home – didn’t realise how noisy hospital wards are at night – can’t be helped I know as children are unsettled at night after operations – but curtains don’t exactly keep noise out! I’m just hoping that we can manage his pain out of hospital – there have been a couple of times when he’s been crying in pain but he’d had all his medication so has had to wait an hour or so until he could get his next dose – not easy comforting him at those times. What we have found is that his pain is worse at night time and I guess that’s due to him relaxing and the fact that he has no distraction.

His take home medication has arrived – yippie!! So we’re off home with a spanner to tighten his frame, a walking frame, a wheelchair and a board for the wheelchair to support his leg in tow. Hope I can fit everything in the car!

Henry’s story continues next Friday, and you can read part one here and part two here. Sarah is telling hers and Henry’s story to help raise awareness of Bilateral Talipes. If you enjoyed reading this, or if you are a parent in a similar situation, we’d love to hear from you in the comments section below.

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