2 year old AKA Danny Ben

Danny Ben has turned into a gorgeous laid back little boy which I whole heartedly have to admit he gets from his father. Although Rob would say when I find him I’ll let him know!!! Danny has been walking now for a few months and now gallops to the washer and the cooker when they beep as a matter of urgency. He is soo funny because I never see him get up so fast as I do when these appliances are beeping. He is so smiley all the time and gives exactly the same cheesy grin that Tom does. He is such a pleasure to have and both Rob and I feel soo lucky and proud that he is ours as he has continued to do so well despite the medical profession predicting he wouldn’t.

Over the last month however Danny has been alittle under par as he has suffered from two gastro bugs. The first incident was just before we were due to go on holiday on 16th August. We went to PICU to pick him up and clearly could see he was not well as he was vomiting but suprisingly we were able to take him home anyway but it was clear when he started to vomited blood that we were very much out of our depth so we took him back to PICU where he was placed in a cubicle with his own nurse for fear of passing it onto the other patients, he continued to deteriorate and became very dehydrated very very quickly, which was quite a shock to see this bubbling little boy bursting with energy so poorly with a CRP of 240. I couldn’t fault PICU and how they were on the ball at every turn especially one nurse in particular who I thanked personally afterwards so they know who they are. After a few days on a drip to give his gut a break and a course of anti biotics he was back causing chaos, ramming us with his walker once again.

A few weeks of this and he was back vomiting again. The whole thing played out exactly as before, he was dehydrated and vomiting blood so after having him at home for a couple of days we had to take him back to PICU early. However this time he was not placed in the cubicle and you couldn’t really say to begin with that he was given his own nurse as when we were there they were used for anyone but Danny. This time Dan has not picked up so quickly as they went back to the policy of “Watch him get to a life threatening state and then we will treat him”. Today Daniel was left to the point of vomiting faeces, yes you read right which is life threatening. His nurse was great today however and stuck by him like glue but the doctors appeared to have just ignored there efforts. The consultant yesterday looked at Daniels feet and hands and said lets feed him. His abdomen wasn’t examined despite the bile bag full of old blood. Today however even after the PICU consultant was informed his poop was coming back on itself into his stomach, couldn’t even grace Daniel with his presence at his bed space but then in the whole two years we have been there they have never uttered one word to us.

After our son had vomited poo a surgical review was asked for and an x ray as a matter of urgency. If Daniel would have aspirated his poo he would probably have got a severe bout of pneumonia which could have been fatal but what is Daniel to these doctors. It is not them who would be mortified, it feels like all Daniel is to them is a bed blocker and a fanancial burden.

After he saw the surgeon his jejunostomy was also put on free drainage so that the poo comes out before it reaches the point where Daniel can vomit it. They also said to aspirate Dan’s stomach every 2 hours. He is now on everything IV and nothing is going into his stomach. His x ray showed lots of air and some poo but not a blackage as yet. Dan has been contipated since last nov intermittently even though he has been on lactulose so if there is a faecal blockage, in our opinion this could be avoided if Danny was properly reviewed and not just past over.