Insecure

Happy New Year to you all!

Danny Ben has been through a hek of a lot since August 08 but has come out the other side. He is now back on form, doing well with putting on weight. His development took a hit when he was poorly but now he is bigger and better than before. He has taking to running and crawling so his upper arms are getting stronger, he also sits from standing in the middle of the room which he found hard to do before. He has now hit the terrible two’s though. He smacks Tom and tries to tip the cats bowls over but when we tell him off he just laughs!!! 

Danny Ben has now, since the end of October spend time sleeping at home. Although it is on and off I might add, when the carers are sick we are stuck either taking him back to PICU or staying up ourselves which is what happened on Christmas Eve.  He isn’t even discharged yet and this is on going, the community team do not cover  nights when someone else rings in sick. There is only ever one that covers for us and that was when they were on Annual Leave themselves. Despite that we tried to have a good christmas but it made it difficult to make any specific plans as we are totally at the mercy of whether the community team will show up or not!

Since Danny Ben was poorly he has become very insecure and unsettled at times especially when going back to hospital. He has been home now since the 23rd December so when he has to go back on Tuesday, I think he will find this very distressing. Is it really fair to keep upsetting him in this way when all he wants is to be in the same environment as the rest of his family. Don’t get me wrong he loves the attention he gets from the nurseing staff on PICU. The female staff dote on him and the male staff treat him like one of the boys so he loves that but that shouldn’t be, he should be at home with us. We understand that it has been difficult to get staff for the home care team but enough is enough. As far as we are concerned the home care team have failed to get Daniel out on every date they have given us.  He has been a inpatient in hospital for over 2 years, the care team was established some time ago so Why is our child still not discharged when an outside company have said they could do in in 3 months. Why???? The care team are now said to have been given till March 09 to get Danny home, given our past experience with the team however we feel it is unlikely to happen which will then add another 3 months on to him not being at home with us. He is 3 in July!

Can any of you tell me that you would be ok with your child be emotionally pulled apart to the degree Danny’s is at the moment when being forced into situation he doesn’t want to be in?????

Despite everything he is a thriving cheeky chappy and has had an amazing winter with only one chest infection so far………………… compared to last year thats a remarkable achievement for our little star.