Amazing

Danny is doing really well at the moment, he is so happy and cheeky and he never ever sits still for more than 5 seconds. He is quite the little walker at the moment. Rob has been off over easter which has been nice. I have put things in place so that Dan can walk from me to Rob and vice versa. He is loving it although he has had a few tumbles but after a little cry he back on his feet wanting to go everywhere. I love seeing him so active because it means he is making the most of being at home. He has also become quite mischievous, I have his vent on wheels now so he can get about more but the other day his nebuliser was going which is so noisy and Rob was on his laptop working whilst I was pottering about doing stuff. It takes a good 10 mins for his neb to go through and when I came to suction him the little minks had turn off his ventilator. He has been making a bee line for it recently and when we try and distract him, he just give a cheesy grin. Now I have to make sure I watch him like a hawk when he is having a nebuliser. I suppose there was always going to be a time when he was interested in the things he is attached to. He was completely fine but I’d rather he didn’t make it a regular occurance.

When Rob took him back last night he was very clingy and wanting Rob to pick him back up, I envisage this to get worse as he gets older and knows his own mind more. It’s really funny because when Rob rang PICU this morning I joked with him and said Dan had a nurse from Derby City as I said they are now having to borrow staff from other hospitals and not just wards. They might as well have got his nurse for today from another hospital as when Rob asked what Dan’s sats had been over night, they replied 100%, all night, in air. Daniel does have occasions where his sats are at 100% but certainly not all the time so I asked Rob to look at his ob’s sheet tonight and sure enough his sats were’t 100%, they were in the mid 90’s. Why say his sats have been an 100% when they haven’t? Dan has an airway problem, as well as chronic lung disease. His sats are never going to be a 100% all the time so we knew this could not have been the case.

When I arrived at the QMC today to pick Dan up, I recieved a phone call asking me to go upto PICU and get Daniel. I haven’t been onto PICU for weeks and as a result my stress level has improved no end. They said it would help them out as they were busy with all the other patients.  I asked to speak to the nurse in charge and I told them I would not be going up and that they were to bring Danny down and they did but they sent him down with a ward nurse and a student nurse. This child who is supposed to be worsed case scenario who Daniel’s consultant says needs two people of whom are trained to Daniel’s needs. It seems very unlikely that the student nurse wouldn’t have had any experience at changing trachy’s and if Daniel isn’t allowed to be tranferred to a ward because it is not safe for him then how is it safe for him to go anywhere with a ward nurse other than PICU.  Especailly as Dan’s consultant will not let me or Rob walk Daniel from B Floor to PICU on our own. The consultants on PICU need to stop accepting patients they do not have the staff to look after. As it was Daniel was not put on his swedish nose for his hour off and he was still on free darinage because of staffing issues. This I feel does not ensure that Daniel’s needs are being met to help with his development.

On a happier note Tom is doing so well with his pooing on the potty, I am sooooooooo proud of him.