No Communictaion

Danny was a little out of sorts yesterday, his cold has made it so he is working a bit harder at his breathing as his respirations were up a little and he was nasal flaring too. He also had bright yellow bile which is always an indications that he is off colour. I had to keep him unclamped as he kept coughing and wretching. Thankfully he has settled today although he is still very snotty. He was happy in his self but the little monster would not go to sleep. I put him in his pushchair to see if this would help but he just played, kicking his feet together. That boy does everything with his feet!! He finally fell asleep in the car on the way back to the hospital which wasn’t great as I had forgotten his pj’s so had to disturb him so I could change him so he wasn’t too impressed.

Rob’s letter to the consultants on had the desired effect for now, they are going to check with Danny’s own consultant who will clarify their agreement and so that should be an end to it , however, I have a feeling it won’t be! The thing is these consultants won’t even talk to us about it, it feels like they consider us beneath them. We are not ogre’s, if they were to talk to us and tell us why they think it is the right time to put Dan’s peep down then we may agree with them but it just gets a bit frustrating when these people never have a united front. One says one thing and another will say something else and so on.

Their is no one more than Rob and I that would like Danny off his ventilator but it needs to be done in a way where he will cope and I think that a month will give him the time to grow a little and then maybe cope better. The thing is, the first time his peep was put down to 7, he didn’t cope and from what we could gather although we don’t know for sure as no one ever discusses anything with us, his consultant was not planning on reducing it again as as far as they were concerned he couldn’t cope so if they wean his peep too soon I am concerned that they will not try again in a month or 6 weeks etc. We just haven’t been given the opportunity to put our point across. It does concern me too that these particular consultants have never shown an interest in Danny in 11 and 1/2 months so why now??? His own consultant has told us that the other consultants are very frustrated with the way his peep is being handled!!!

On another note, Danny’s discharge. He has been given his funding for his carers, however we have not heard anything about his discharge for 2 months. The parents of the patient across from Danny seem to know more about his discharge than we do but it is what we have come to expect from the NHS.

Tom went for a sleep yesterday lunch as he has not been feeling an hundred per cent either and all this to-ing and fro-ing from the hospital doesn’t help. The poor little guy is so tired but he does enjoy having his little brother home. We went to nan’s yesterday which was nice, although I feel Tom felt a little pushed out when Nan gave Dan a bit of attention as he normally has her all to his self so we just gave him lots of cuddles. At one point Tom also offered to suction Dan but at this point in time I declined his offer but I have visions of walking in on him one day doing this so I’ll have to keep a close eye on him when Dan gets home.