PICU Strikes again

Danny trotter as Tom calls Dan is a bit under the weather at the moment, he is back in oxygen and has thick thick secretions. He has been very tired in himself but is still bum shuffling and cruising everywhere. Last week he fell and hit his face on the hard floor of PICU so now he has a massive bruise so it is safe to say his toddler days are finally here.

On Friday it was Tom’s birthday so we went to pick Danny up so we could all spend the day together. When I got there his nurse had gone off to fetch a bile bag as there was none on the unit which on a well day for Dan wouldn’t have been a problem but because whenever he is unwell he pours out bile like there is no tomorrow. On these occassions he should be left unclamped on free drainage as he just vomits from all the excess bile but I got there to find him clamped so when I had to suction him he vomited and wretched loads but I couldn’t unclamp him because his old bile bag had been thrown away. Danny has a gastrostomy for a reason so it is unacceptable to us that the poor little boy was left to vomit. He had also had a trachy change in the night and been in 3 litres of oxygen and we were not given this information when we rang.

Later that day Rob spoke to Danny’s consultant about the differences in treatment of two ventilated patients on PICU. The other patient is able to go out alone with one parent, however we have to have two people. We find to go out alone with one person to be fool-hardy as Danny is on cpap and the other patient is on ventilation which is one up from cpap at some points during the day and night. Now I know Danny is as unique as it gets with his airway, however he has been stable with his airway now for a year apart from one exception. Now I know that could change tomorrow which is why depsite the fact I really do not want carers in my house, I wouldn’t risk Dan’s health or wellbeing for anything. It is just wrong that one ventilated patient can be taken anywhere, anytime when from day one we were told ventilated patients need two people no matter what. It has been suggested that Dan is more at risk should he collaspe but during the summer months when ever there was a shortage in staff Danny was ALWAYS the one given the ward nurse with no intensive care training and this patient was always given a PICU trained nurse so we find it a bit of a contradiction to then let this patient go out with one adult. Rob also explained that I was worried once my back was turned that he would be given a ward nurse.

Yesterday we came away for the week with some friends which we were really looking forward to. However leaving Danny for a week has been the hardest thing we have had to do and the longest we have ever left him for, walking away from him was earth shattering especially after Fridays events, if I can’t trust them to have a bile bag for him then how can I relax and let go for the week and trust them to look after him. I was all set not to go but I do not want Tom growing up thinking I always put Dan first so I came away but leaving him gutted us.

Saturday morning we popped in to see him before we left and everything was going fine. It rained and snowed all the way here which wasn’t fun for the drivers. We rang all day to see how our little treasure was and all be it from being quiet and under the weather he had been settled. I rang later after the change over of shift to speak to his shift nurse to be told by the nurse in charge that he was being looked after by a ward nurse, they said they are experienced in tracheostomies but no one is experienced in tracheostomies like Dan’s apart from PICU staff as they have done them. Last time we came away they did exactly the same thing. I realise their resources are limited but they have just employed more nurses so this should not be happening especially at the beginning of the winter season. Tom is our child and we decide who gets to hold him or touch him but PICU take that away from us with Dan and it feels as though they can just pass him around like a parcel. At the moment developmental wise he is very warey of people he doesn’t know and cries because he is so anxious so not only does he not have his mummy and daddy this week, he is poorly and they have put a nurse in front of him who he does not know; I am sure that this must be quite frightening fo Danny.

I would take some comfort in the fact that these people would be given a decent handover but we know that doesn’t happen either and epescially as the previous nurse was new so how can they possibly give a decent handover. Although it seems our social life is always handed over superbly. Even information that isn’t true as apparently Tomas was having a party on Friday, however we had never said he was having one. It is always Danny who looses out and this is supposed to be in his best interests knowing how unique our little star is which is why he shouldn’t be looked after by nurses that do not know him and more importantly who he does not know.