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.

Danny boy seems to want to chew on everything………………………………………….well except food. He will drink juice though so there’s hope yet. He did another hour off his ventilator today as we knew he would. We don’t know how much Dan is capable of doing off his ventilator but we do know he is capable of alot more than certain people give him credit for.

 The PCT have said that the specialist nurses will be in position on 21st April and that the interviews for carers will take place on the 22nd. I would like to know why it has taken 2 months for these nurse to be in position as the interviews were at the beginning of March. We were told the whole process would take 3 months but is going to be more like 5 because after the carers are employed they will also need an induction period of a month which means Dan will have turned two before he is discharged. It is not acceptable.

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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.

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Dan has been a little tired today but has been on good form.

He has been busy getting around and into everything. He is a proper little person now, full of personality. He has had lots of quality time with everyone.

There is not a great deal that has changed, he is still in and out of oxygen like a yo yo. In air by day and in o2 by night but this we think is how it is going to be until winter is on its way to being over. He had his RSV jab again the other day so that will probably have an effect on him in a couple of days. He is due to have a bronchoscopy tomorrow to see if there is any change with his trachea. I personally feel there is some change because it used to be so hard to do a trachy change on Dan but now, touch wood, it is easier and the tube just slides straight in so hopefully there has been some change for the better. Fingers crossed!!! It will also give his consultant a better idea of what they are dealing with today and whether he needs a longer tube to keep his airway stented. After this he may go on to have another CT scan, I suppose this will let them look at it in more depth.

On a different note it would appear that the hospital condone what the nurse did over the swedish nose incident as they have given this person a promotion. Which makes us laugh as when I spoke to Danny’s consultant about the fact the nurse had just gotten away with it, they assured me they hadn’t and then we find out this nurse has been promoted. It gives us so much faith in the NHS system…………………..not.

I nearly had kittens when I first got to my aunty’s as Danny has rather thick secretions at the moment and I thought he was blocking his trachy but a nebuliser, a few pats and he was as right as rain.

There have been no developments about what happened at the weekend but we know the truth and when all said and done that is all that counts because when we leave that place we will never have to see this person again. I just hope their conscience is clear. It really bothers me when other staff are coming up to make sure we will not be taking him off his vent when we have done nothing wrong, especially when I said he won’t be coming off and asked for his peep to go back up. We have never compromised Daniels safety nor will we ever and have always took all the equipment on the check list. We trust these people to guide us with our child, to make the right choices with regard to his health and safety but with what happened last week with the peep and the swedish nose and with what happened at the weekend, well it just feels like they are not thinking their decisions through. When I asked for the peep to go down they should have said, not at the moment as he is spending time off, lets not push him but instead they said, “lets try him off for 2 hours”, to which I said no. We want to get out of that place so much but we will not do this at the expense of our child. We have come through too much with him to have him pushed beyonds his limits. Danny means the world to us, he is one in a million so we don’t take risks.

We got to the hospital to pick Dan up only to be told by his nurse we can only take him for 6 hours from now on which equals 21,600 seconds a day which isn’t alot at all when you also take into account the 16 months we have been without him due to his hospitalisation, it is nothing when medically he doesn’t need to be there and no one knows why this rule has been put in place by the ward manager; the manager hasn’t been to see us to explain their decision. We are left once again being told what we can and cannot do with our own son, with out being given any kind of explanation as to why he can only be away from the hospital for 6 hours. If it is down to something happening with regard to his health and safety then something can just as easily happen in 6 hours, as it can in 12 or 24 etc. Needless to say what will happen once we are home? A check-in every 6 hours maybe? The time he is away is not relevant if we have all the equipment they specified on the check list. Although the manager has had equipment added to the list today which is quite concerning as we are putting our child’s safety in their hands and we have been taking him out without all the equipment he needs as it wasn’t specified. What else should we be taking???

As far as we know, nothing has happened with regard to what happened over the weekend.

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