Stressed and anxious

Danny is full of cold at the moment which because he is still on anti biotic, he is doing ok with. We have had a super week with him, Dan has been to Nans monday to wednesday and friday he went to uncle freds where he made lots of noise with spoons and pans. Our family have been excellent throughout all this. The dog kept trying to lick him so dan kept smacking him to get him off. Tom use to do that with seven (the dog) too.

Dan finally got his christmas present which was a discovery dome which he seems to love pushing the balls through, and he tries to walk round it.

On another note the National Health service sucks……………………………… we received a response to our complaint about the gauze that was on Daniel when we came home from our holiday on 15th Dec 2007. It stated that Daniel had had a wash in the morning, the gauze was changed during this time and that there was no further leakage. However, we got back at half four and we bathed him as soon as we got him home when we changed his tubes to the correct ports. It takes half and hr max for us to get home so it is not possible that the gauze ended up in the state it was in, in half an hour which is what the response seems to be suggesting. It also stated that the ward nurse was given a full handover but then went on to read they will make sure they are given a full handover which is a contradiction in itself. If these nurses get a full handover why would they need to be told again. We’re not being funny but in 10 mins we would struggle to remember everything they need to know. It also stated that no one could say for sure which tubes were where, this is not good enough.  They should know exactly which tubes are in which ports for dan’s own safety but it read everyone knew that Dan is fed into his jejunostomy. However, not at any point in the time that we have been on PICU has any staff member opened his vest to check as they don’t need to because they know he is fed into the long extension but this was in the gastrostomy. So with this in mind had a PICU staff member taken over in the evening, which is what happened, had we not spotted this mistake then he would have been fed into his stomach which would have caused him to wretch, vomit and possibly drop his oxygen levels. Now we would consider this unacceptable for any child, not just Dan.

We are so tired with the fact the higher arky always add to our stress and anxiety. All we want is for them to say they are sorry and admit on this day they could have done alittle better with the care Dan was given. Going to and from the hospital is so tiring and stressful, not because of Daniel but because of the added stress being trapped in the NHS system places on us by not accepting their responsibilty when Daniel’s care is less than perfect. We even understand that circumstances will sometimes dictate that this may be the case but it doesn’t mean they shouldn’t apologise when this happens because right now apart from a couple of senior staff members, we feel like we can’t approach any of the other senior members and it feels as though they just don’t care about our son and the care he receives. We personally dread going onto the unit for fear of who is going to have a go at us for something, we are constantly on the defensive because of this. For the most part the care Danny receives is of a high standard so would it be too much to ask for a sorry when it doesn’t go to plan.

We are continually told by Dan’s consultant that he is one of a kind and not just any trachy kid so precautions need to be there for his safety.  So please keep our son safe by making sure his gauze is clean and that he doesn’t get MRSA again and that he is given drugs and feeds into the right tube.

Yesterday we had such a lovely day at home with all the kids. Dan was happy playing with his dome, Bridie was playing dress ups and with her baby, although am not sure we would trust her with ours as she keep forcing the dummy in its mouth and Kyle and Tom played upstairs on the dreamcast and with their toys. We took Dan back to PICU at 8.30pm as he was due to have his RSV jab, we were greeted there by a nurse that didn’t know Dan.  So we were put under more stress again at the hands of PICU for fear that something would go wrong with Daniels care that could cause him harm espacially when they refuse to take responsibilty when something does go wrong and even after we had stated to the ward manager that the last incident with the gauze and the tubes was the final straw. Daniel is our child and we have parental responsiblity for him and they just do what they want when they want, we are struggling to cope with the fact it feels like they do not consider Daniels safety a priority and we are at the point where we feel like we cannot watch it anymore as it is too painful to see someone we love so much being treated this way. So if they keep pushing they may find that when daniel is due to be discharged, there may not be a family waiting for him.