Still battling on

Once again little Dan is facing more struggles.  We were told a couple of days ago that as a result of long term TPN usage he is suffering from Liver Disease, this is why he has been looking a little jaundiced of late.  During his recent operation they took a biopsy which will take a week or two to get the results back from. This afternoon the liver specialist came to visit and give an initial discussion on what the future may hold with regard to his liver. 

She told us there are two possible scenarios for little Danny; the first is that once his feeds are started then his liver will start to recover and begin to function correctly.  The second is that it will not recover and will end up requiring a transplant. Her feeling is that he will probably end up somewhere in between which means that he will require a lot of attention from the liver specialists.  This, she told us, would mean that he would need to be at the Queens and given her understanding of our feelings towards the hospital she would speak to us now so that it is not such a shock. We asked about him being treated at the City hospital but she said that if that was the case then she would only be able to see him during the normal working day on 2 days per week, the rest of the week she would have to visit in the evening which would mean writing it up in his notes which could be mis-interpreted as the doctors would all have gone home.  We were quite shocked at this as once again it felt like we were being held over a barrel, so to speak. This basically says to us that if he is not here at Queen’s and is 5 minutes down the road at city then we will not give him the best care despite them both being the same hospital now.  We have decided that it is going to be best to speak to the doctors and nurses when we return back to the city as we do not feel we can talk to the staff here as they do not make themselves approachable. We are told that if he’s still ok over the weekend they will be looking to take him back to the city on Monday. The irony is that despite all the recent press about the staffing levels at the city neonatal unit the standard of care was far superior while Danny was there to what he gets now.  So here we are again with a whole new set of problems to worry about and to be quite honest not really knowing what to think next.

On a lighter note we have found out that the TV guide is wrong and that the show that Danny’s featured in will be aired on 8th Oct 06 between 8pm and 10pm as originally planned.  Angie popped in tonight and confirmed it, she also dropped in a present for Tom and Danny, bless her, thanks Angie.

After Tom spending all week at auntie Rita’s; he, Kyle & Bridie have gone off tonight to my sisters, Aunty Wendy to spend tonight and tomorrow night.  I’m going to pick them up tomorrow afternoon to bring them to the hospital so we can spend some time with them but they’re going back at teatime.

Last but not least, sorry about the poor quality photo’s. We took the camera home while we are here so these are off my phone but these are some of only a few since he got really poorly.  We’ll be back to normal soon though.