- 27
- Jan
Dan Dan is not too great at the moment because he is full of cold again and has a temperature and so has tomas. Both of them are dosed up on Calpol and Nurofen but are grumpy when it wears off. Tom went to bed at five tonight and has pretty much been asleep since although he did wake briefly getting in and out the car when we had to take Dan back to PICU, saying that he was cold and that I should have brought his blanket, bless him.
Dan was fine last week but then he had to go for an operation on his jej and gastrostomy to stop his intestines from protruding out the holes so the doctors are wondering if he is having a reaction to his surgery but Rob and I both feel he has what Tom has because their symtoms are identical. I suppose it is better to be safe then sorry.
Life is going to take a turn for the worse this week as we are not able to go to my mum’s sisters anymore so we won’t be able to take Dan out now as his consultant says we need two people and I don’t have another 2nd person. They did suggest a volunteer sit in service if there is such a thing but as far as I am concerned that is not acceptable. I have two children and I am not having Tom’s life upset anymore. They need to come up with something better than that.
Personally I think that measures could be taken to ensure Dan is safe at home with me. Don’t get me wrong, I don’t want to be on my own with him but I don’t have no one else to ask. For instance, before my mum died she lived on her own and because of that and her condition we got her a panic button which one night she pressed and this was then sent to a type of call centre who in turn rang an ambulance for her and she was sent to the QMC. So I feel this too could work for Dan. Also I would be more than happy to ring PICU every half and hour to keep them informed.
If we were at home, the way our house is set out I can always have Dan with me or see him for example, if I went to the toilet downstairs then their is an electricity socket right out side so I would take him with me, although when the carers are with him over night they will have to leave him sleeping on his own but still, I would take him with me. If I am in the kitchen I can connect him in the dining room and see him and as the dining room and lounge are all open then I would always be able to see him if I was in either room. I would always take him with me because I would never take any chances as I would never live with myself if something happened to him.
Tom is not fairing to well with all of this at the moment, I just want to give him back some normality and now he can’t go to my aunty’s which has had an impacked on his routine as he knew it. I have to choose to either stay away from Dan or subject Tom to PICU which because of Dan operation he spent the last two days there and on both days had an accident so in simple terms it is just not safe. It is also not acceptable that I have to choose between my children, all because the NHS cannot get their act together and discharge Daniel. So that means I can’t see Dan and that is not fair and to be honest I can’t handle being a part time mum, I would rather not see him at all than just see him for an hour in the evening! So in simple terms Tomas or Daniel, which one would you choose???
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