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Danny has had a good couple of days, he has been happy and very smiley and developing well. Everytime I went to sit him up he went to stand, it was so funny.Yesterday I stood him on his turtle toy and he looked like he was surfing and everytime one particular doctor came near him he just beamed with smiles. Although today I did drop a box of half empty tissues on his head when the physio wanted to wipe his still snotty nose, I passed them expecting them to take the box but they didn’t and I let go and it hit Dan on the head. He was not impressed as he cried and held his breath for quite sometime which made him desat to 59%.

Yesterday there was a massive meeting with all the big wigs to discuss what was to be done about Dan and the MRSA with regard to other patients being treated on PICU. I was taken into the ward managers office sometime later and there I spoke to Dans consultant and the ward manager. They said I had to take it very seriously which I kind of took offense at as I have taken it very seriously since I found out Dan had it. I wouldn’t spend my time in tears or I’d be able to sleep at night if I found it funny and yes Rob and I joke about it because we are gutted, I personally would be totally depressed by now if I didn’t. With all due respect we feel that if they had taken it more seriously when Dan first got it and didn’t take Dans nurses from the cubicle to help out on the main unit because of staffing problems or leave his door open to listen out for him when no one could be in there, things may be different to how they are right now.

The outcome of the meeting I am told, because of space and oncology patients who are immune compromised Dan will be nursed in the main unit at the bottom end. They have placed a curtain screen to separate the top ‘clean’ end to the bottom ‘dirty’ end. The nurses looking after Dan have to ask other ‘clean staff’ members to fetch everything for them, this when they are busy will be interesting. They also have to wear clean aprons and gloves all the time. The nurses looking after Dan are not allowed to tend to other patient now either. This situation leaves a lot to be desired as we are told that the type that Dan has is “airborn” in which case screens and separation are not adequate measure to contain it. Rob and I are also not allowed to moved from the bottom end along with the kids which again is just great as the kids are loud so we are forever telling them off for being too loud, it is hard enough to entertain them at the hospital as it is and now it is going to be even more difficult. Tom loves all the nurses so I know for a fact he will want a cuddle from them but now they will have to reject him so this will not be good for his self esteem as he doesn’t understand what MRSA is and he has a tough enough time as it is. They are not allowed in the playroom because it has a carpet and not a cleanable service. As a family it is going to cause us great stress when the kids are there and this we feel is unfair as we are so stressed about all of this as it is. Lets hear it for the family…………..not! I did ask about what I was supposed to do if I was tending to Dan and Tom ran off down the unit, do I run after Tom or tend to Dan and they said that is something we have to think about. Do I potentially leave Dan desating or run after Tom so he doesn’t get man handled by someone else. Anyone?

They are going to see if the kids can play in the playroom as it will be alot easier to contain there boredom in there but I can’t see the powers that be going for that even though Rob and myself are still able to go in the family room, it is in my opinion double standard. Personally I have had enough of the NHS and MRSA, the sooner they get our son home the better. One thing about the MRSA is that we feel they will fast track Dans discharge now.

They did say they want me to start and take Dan out with the play specialist or Rob which I will do happily when I can remember what I have been taught about resus. I did do a little on it today with Dans nurse who was excellant at explaining it but I am abit confused because what is written on Dans resus sheet isn’t how resus is performed normally so we stopped because there is no point in learning something that isn’t right. When Rob and I are confident about what we are taught we can take him out and then take him home at weekends. They also said I can take him out with friends but unfortunatly all my friends work so this is doubtful, would be nice one day. I get the impression they would like Dan off the unit more and more now but until they get the carers inplace it will only be possible at weekends when Rob is available as Dan has to have two people with him all the time unless they stump up a body….

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