My daughter Emma is nearly 8 yrs old. She has been braced for nearly 5 years, but her curve has now started to progress too quickly. Her Ortho Consultant (at Great Ormond St Hospital in London), has booked surgery to insert "growing rods" in 2-3 months time.
Naturally I'm very jittery about this (though keeping a calm face to her). Emma is also hemiplegic (so her arm and leg strength is weak), she can walk but sometimes needs a wheelchair for back-up during long outings, she also has Aspergers, so her pain/discomfort threshold is very low.
The hospital information site, says the op will entail a 7-10 day hospital stay (if no complications), followed by 4-6 weeks off school, then a week or 2 of half days, with no PE for 3-6 months. I've advised the school, and have suggested they involve her OT & Physio, to gain advice about seating, bending etc.
Some questions I hope you can help me with ?
1) We live over 200 miles from the hospital (I can't drive). Will it be okay to bring her home from hospital by train ? If so will she be able to transfer from her wheelchair to a seat, or would it be better for her to stay in the wheelchair?
2) During the 4-6 week post-op period, will she be able to get to her bedroom upstairs, or should a bed be made up for her downstairs ?
3) Will she be ok to sit at our desktop PC (she adores the PC) ?, if not I might try and get a little laptop for her.
4) The hospital site said they will organise a community nurse to call to check wound-site etc. Is there likely to be pain relief medication provided ? Would it be available in non-tablet form (she can't swallow tablets) ?
5) I understand that "growing rods" need to be adjusted every 3-6 months. How is this done ? Does it involve new surgery and hospital stays every time ?
6) I believe that she will need to stay in brace after surgery, will the operation mean that she can eventually "lose" the brace (which she hates) ? If so, how long is it likely to be until the brace is no longer needed ?
Apologies for all these questions, but in the UK NHS service you get very little face-to face time with your consultant, and when he informed me about the need for the op, I wasn't expecting it, so had no questions prepared.
Naturally I'm very jittery about this (though keeping a calm face to her). Emma is also hemiplegic (so her arm and leg strength is weak), she can walk but sometimes needs a wheelchair for back-up during long outings, she also has Aspergers, so her pain/discomfort threshold is very low.
The hospital information site, says the op will entail a 7-10 day hospital stay (if no complications), followed by 4-6 weeks off school, then a week or 2 of half days, with no PE for 3-6 months. I've advised the school, and have suggested they involve her OT & Physio, to gain advice about seating, bending etc.
Some questions I hope you can help me with ?
1) We live over 200 miles from the hospital (I can't drive). Will it be okay to bring her home from hospital by train ? If so will she be able to transfer from her wheelchair to a seat, or would it be better for her to stay in the wheelchair?
2) During the 4-6 week post-op period, will she be able to get to her bedroom upstairs, or should a bed be made up for her downstairs ?
3) Will she be ok to sit at our desktop PC (she adores the PC) ?, if not I might try and get a little laptop for her.
4) The hospital site said they will organise a community nurse to call to check wound-site etc. Is there likely to be pain relief medication provided ? Would it be available in non-tablet form (she can't swallow tablets) ?
5) I understand that "growing rods" need to be adjusted every 3-6 months. How is this done ? Does it involve new surgery and hospital stays every time ?
6) I believe that she will need to stay in brace after surgery, will the operation mean that she can eventually "lose" the brace (which she hates) ? If so, how long is it likely to be until the brace is no longer needed ?
Apologies for all these questions, but in the UK NHS service you get very little face-to face time with your consultant, and when he informed me about the need for the op, I wasn't expecting it, so had no questions prepared.
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