After a long week in hospital, Daniel is back home with us at last.
Government for the few it seems.
Originally posted on th
This week Daniel has been in hospital to have an operation on his knees to correct the way they’re growing. The op has gone well, and although recovery is slow, he’s getting there. It took a day or two, but he’s come to like the staff who interact with him. Dinner lady is one of his favourites, as is the night nurse. But its one of the student nurses who really engaged him. Her name is Zoe, and she has been fantastic with Daniel. She spoke to him, and not down to him. She humoured him when she asked what he wanted to do when he grew up when he answered “To be a surgeon like Mr Barker” (the surgeon who did Daniel’s op.) Many would have laughed it off, but she replied that the next time he saw Mr Barker, he should ask for some advice. It sounds so simple, but that kind of interaction would make any child feel respected.
Daniel and Zoe hit it off over something unlikely – The Lego Movie! Matthew & I had taken in one of the Lego Movie cups that are in the McDonald’s Happy Meals. Once Zoe saw the cup, she told Daniel she’d been to see the movie, and did he like it? Well, that completely broke the ice, and Daniel was happy to talk lego with her. It was common ground, and for an aspie that finds interaction with strangers very hard, it was amazing to see him open up with her. Her threats to steal his cup sparked Daniel, and he was able to joke about it with her. I don’t think its a coincidence that he’s been much more open with the other nursing staff about how he’s feeling, and the level of pain that he’s experiencing after opening up to Zoe.
You can see variable levels of “customer” service within the NHS, good and bad, but it may sound patronising, but the young lady that managed to open up Daniel is a real credit to nursing. There’s been so much negativity about the NHS in the media – repeating Tory dogma that the service is failing. When you see how much front line staff are stretched, anyone on the ground can see that’s down to government cuts to the NHS. So much for cutting the deficit, not the NHS. Its been the other way round. But that aside, Zoe has a superb manner that should make her a great nurse. Despite the hours, and being on her feet constantly, she always had a smile on her face, and was bright and cheery with Daniel. She would always talk to him directly, and not through us. I think it made him feel valued and cared for. The fact that a pretty young lady was paying him so much attention was neither here nor there for Daniel!
Sadly, she had her last shift on Wednesday, and will return to the classroom to resume her nursing studies. Daniel was upset that he’d seen the last of her. Its sad that she may never know what an impact she has had on a 6-year old aspie, and what an amazing job she has done with him that he trusted he so openly. We’ll be putting a card into the ward to thank the clinical and domestic staff for everything they’ve done for Daniel, but will make a note of singling out that one young lady who helped our little man so much.
As many will know, our little aspie – Daniel – has been in hospital this week for an op on his knees. The operation went well, and recovery is well underway. Slow recovery. Like most ASD children, sitting (or lying) around waiting isn’t something they are capable of managing and the strain has been telling on Daniel. His view of the op was that he’s be on his feet the following day and would be walking out of the hospital. The reality has been very different, and he’s found it hard to cope with. There’s a lot of work with the physios involved, and he’s been resistant to their input because however necessary it is, it hurts. Its difficult for him to accept that he needs to go through that to get home, and he’s desperate to get home having watched other children be admitted then discharged before him.
When I took Matthew to see Daniel last night, it was evident however that he was starting to make good progress. He’d been on his feet for 30 seconds (it doesn’t seem long, but for Daniel it was a triumph) and had been able to go through to the play area on the ward. It really lifted his spirits to think that he was moving forward at last. When we saw him, he was looking much happier than he had the day before. Despite the work with the physio, I think he sees discharge coming a little bit closer, and that is motivating him at last. Its a big psychological barrier to get over, and now he’s done it, I think he’s progress much more quickly. The positive sign last night was that he and Matthew had a little “debate” over which DVD they’d watch during the visit. Matthew had been fantastic with Daniel this week, and has been so worried and caring, but to see them resume some of their normal day-to-day interaction is a move forward, and is a clear sign that Daniel is getting better.
But its been a long week for him. Inevitably there’s been a lot of waiting for him. Waiting to see the doctor, waiting to have details taken, waiting to go down to theatre, waiting for medication, waiting for food. Its been difficult for him to cope with all that but I think its now starting to work as a motivator for him. If he can prove to clinical staff that he’s capable of moving around, then he’ll get home and the waiting will be over for him.
We’ve still got no idea of how he’ll cope around the house and getting to school in the immediate term, but that is a worry for another day. Right now, Daniel just wants to come home, and that’s something we all agree on.
If I had to name one fault of D’s I would love to change, it would be the unrealistic expectations he has of himself. He has to be good at whatever he does, and by good, I mean perfect. Second best is just not good enough and this is where much of his frustration stems from.
It is for this reason we have to be as honest as possible with him about everything he is going to encounter. Where is operation was concerned we gave he has much information as we felt he needed and answered all his questions honestly.
When he asked if it would hurt, he was told the op wouldn’t because he would be asleep – and then explained anaesthetic, but that is would afterwards and that is why he would be given medicine. One of D’s other problems is he doesn’t like being visible which means…
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Poor guy has been so brave.
D’s operation was yesterday.
We arrived at the hospital and were shown to his bed and his information was taken by a student nurse. There is a real mix of ages in the ward, from baby to 16 and most somewhere in the middle.
One of the doctors underlings came and spoke to us and explained exactly what was going to happen – my knees ache at the thought of it. We also had a visit from the anaesthetist who let D choose the flavour he wanted added to the air that would put him to sleep – he chose strawberry which is apparently the most popular. The play leader then arrived to show him pictures of the theatre and the things he might see when he went down. The best thing though was she gave him a mask to try on for size so he knew what to expect…
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