Eventful Day

Today has been a very eventful day. Danny’s peep went down to 6 which hasn’t phased him so far. He isn’t tired and for a couple of minutes he was tried on a swedish nose which also didn’t phase him. For those of you that do not know, this is what Danny would have at the end of his trachy should he continue to do well with the reduction of his peep, it would be instead of a ventilator. All in all he is good. Dan’s nurse and I took him for a walk to the park with Tom and his new peep and at one point he was saturating at a hundred per cent. Dan is very vocal these days and I would go so far as to say he has a bigger mouth than Tom and I didn’t think that was possible and he is now toddling around with support which is so cool. Tomorrow we are taking all the kids to the fair as it is half term and Kyle and Bridie are over till Wednesday which they are over the moon about.

This morning we also had Dan’s discharge nurse round to up date us on Danny’s discharge. They told us that everything was with the PCT finance department and that they were not being too quick on processing the funding. They said they need a written letter of confirmation for the funding which was given 4 weeks ago and that the PCT were also dragging their heals on this. I was initially told that from the date the funding was given that Dan would be home 3 months later which would take us up to December. If you add on a month for unforseen circumstances then it would make it January 08 but they said the interview date for the posts was PROVISIONALLY on nov 23rd so this in its self isn’t certain. They said that some nurses have to given 2-3 months notice which I find hard to believe because they don’t on PICU but anyway this would take us up to February 08 at the earliest. Then these people have to be trained and they need to get to know Dan so with that in mind we are looking at March 08 at the earliest. This is unacceptable, our son is being denied his basic human right of being at home with his family.

I was very upset at this so I rang the PCT myself only to be told it is alot of money we are asking for, for potentially a long period. WE DON’T CARE, we have paid our National Insurance, we just want what our son is entiled to. The government pays out hundreds of thousands of pounds to people who don’t work just because they can’t be bother so we want what our son is due. When all said and done, its costs a hek of a lot more money to have him stuck on PICU than it would at home with a care team in place. The person I spoke to said they would find out where abouts in the finance department it was up to and get back to me on Monday.

Then I rang a prospective candidate for Erewash constituency who said they would see if they could help, they are ringing back tomorrow. It is becooming more and more clear that the only way we are gonna get Dan off PICU is by him being peep free which is why I went in today and told them just to wean it, so watch this space .

No no, it doesn’t end there. Then I was taken into a cubicle because social services had rung because a couple of weeks ago we had an OT person round about the extension and we told them that we didn’t need a bath downstairs because we have to bath Dan on the days he comes home upstairs and we take him off the ventilator and transfers him upstairs and put him back on which he copes with. This they interpreted to mean, we take him for a bath off his ventilator because ofcourse that is obviously what we said. This person then rang a couple of days ago and said they are writing to Dan’s consultant to see if he is still peep dependant to which I said, ‘ he is on his ventilator 24hrs a day and we simply take him off for the journey up the stairs. To which they said, I’ll just clarify with his consultant so I thought fine. After everything else today this was the last thing I needed and felt like bursting into tear. This we feel is just because the OT social services do not want to fund his extension and they want to get out of it any which way they can. It feels like they have no intentions of doing the extension at all! When all said and done Danny spends more time off his vent when he is suctioned or when he takes it off himself and waves the tubing around at everyone as if to say, ‘Look what I found’. Why is everything about money???