A dream come true

December has been a very busy month……………………………………….

Tommy had his 4th birthday where he got to hand out chocolates at school which made him feel very grown up. I too had a birthday but the less said about that the better and we also went on holiday which was lovely until we got back.

We missed Dan so much so it was hard to relax and enjoy it fully, we were always wondering what he was doing. He was still not a hundred per cent by 9th Decemeber so he was put on anti biotics which he responded well to but was only given a 3 1/2 day course which was abit confusing to us. Tomas too has been unwell and is on anti biotics so it seems to be a family thing. After a few days Dan was put back on anti biotics to get him well for christmas as he went down hill pretty quickly when they had stopped. This time he has had a 5 day course so we’ll wait and see what our little angel does next as he is still full of cold. He is also due an RSV vaccine but the pharmacy cocked up so he will have it boxing day.

When we returned from holiday Danny had a certain aroma to him and his jej set and gastrostomy set was in the wrong ports, I asked the nurse in charge if they knew why and they said no. We quickly scooped Danny together, if that is at all possible and returned home with him where on closer examination of the gause, it was actually that which smelt so I took a photo of it and when I manage to pin his consultant down. I showed it to them and now they are looking into it. By the time I showed it to them, it didn’t actually smell as bad but it still had me heving!

After holiday we were fast looking forward to our two nights at home with our little treasure however that to was taken away as I was approach by his consultant who said they had heard rumours that we were taking him for two nights. They said it was only ever for one night. Once again a ‘miscommunicated’. I would like to know when they will learn from their mistakes or put some protocol in place to stop this from happening. Once again we are left feeling distressed because we were told one thing and then another and they just carry on with everyday life like nothing has happened. A couple of nurses have even asked me since why we can’t take him for two nights now.

At this very moment he is sleeping soundly. Rob and Tom are upstairs in bed and Tom took the opportunity to cash in on the fact I wouldn’t be in our bed so he begged Daddy to let him sleep with him, Rob finally gave in. Tom went straight to sleep at twenty to 8 but Rob struggled to get to sleep as he is normally up for another 6 hours but because I struggle to sleep we decided he was taking the second shift although I feel I will still struggle to sleep as I find it hard to let go. It feels amasing to be staring at our little boy a sleep in the dining room. I took the oportunity to get all my ironing done before the kids arrive. Rob did ask their mum if we could have them an hour earlier so they could spend some time with Danny before he went back to PICU but their mum said no saying dinner would be a rush. Personally I would have let them have time with their brother but there you go!