Still smiling

Well its been about a week since my last posting this has been largely due to the fact that the last few months are starting to take their toll on us now so we have been coming to be too tired to do anything so my apologies.  A lot has happened over the last week one of which being that little Danny is really starting to smile a lot now especially for the nurses, so it looks like he’s gonna be one for the ladies.  At the end of last week there was mentions of Daniel going home, they said that this would not happen for a couple of months as they would need to kit out our home with all of the equipment that he would need for him such as oxygen, ventilator etc. It has also been mentioned that Daniel may require 24hr care which would come in the form of carers, this would not just be Julie and me, it would also be people allocated by the hospital.  This will mean making room for them as Daniel will require his own room due to the amount of equipment he requires and the fact that a carer will be with him at night, this will prove to be a challenge as we do not have the space to do this nor can we afford to move to a bigger house (as most people cannot in this day and age due to house prices being so high).  So it remains to be seen what will have to happen in order to accommodate Danny’s requirements for care.  Danny in himself has been doing really well, he has now managed to get onto full feeds which means he is now on 32ml of milk per hour, when I say milk it’s actually 10ml of bile, 2 scoops of nutriprem and 192ml of milk to last him 6hrs.  He’s also been changed to a nippead ventilator which is what he will be using when he comes home this, for the most part,  means that he is “in air” which basically means that apart from adding pressure to his airway it does little more for him.  In fact the only time he needs a shot of the old O2 is when his is getting upset or throwing a strop which is excellent considering his 3 bouts of pneumonia he’s had. What we have found is that his trachey tube is only lasting 2-3 days on average before it needs changing due to the amount of secretions that he is producing, some of which have actually blocked his trachey tube and caused him to have one of his episodes.  This is something that Julie is learning how to maintain at the moment as it is something that we will need to know for when he goes home.  I will also need to learn how to do these things but it is more difficult as I am at work in the day when they tend to do these things. So what does all of this mean in reality, well firstly there is probably no need to go down to Kings College at this time as his feeding has finally improved but he will need to go in the future for an operation on his stomach.  It also means that he is finally moving in the right direction so home is not such a distant memory and while a number of bridges still need to be crossed he is definately on the right track.