Absent friends

Been a while now since the last posting.  Well the story there goes that last weekend we were all due to go away with friends.  We organised this back in the beginning when we first found out as we were told that we could expect to be in hospital for around 2-10 weeks…..little did we know.  Anyhow we had discussed this over the last couple of months what we would do if we were still in hospital with Danny and decided that as hard as it would be Tom would have to come first and I would take him away while Julie stayed with Dan. So this is what we did, so on Sunday night Tom and I drove up to Slayley Hall to meet up with friends.  We agreed that on the Wednesday night I would drive back to Nottingham to collect Julie and drive back up so that she could be there from Tom’s birthday and then bring her back on Thursday or Friday night depending on how Danny was.  As it turned out Danny was well behaved at least until Friday morning when his broviac line started to leak out and while he wasn’t in any danger as such he did need an alternate line in for his medication if he needed it. This would involve taking him for surgery but as it transpired they could not fit him in on Friday so this was postponed until Monday morning. Last week his trachy tube was also changed to a Bivona tube which basically has an extra piece which keeps it away from his neck and in turn stops it rubbing. All in last week was kinda quiet however all that has changed since last week. On Monday he went down for surgery to fit a new line for his medication and also to change his access to his gastrostomy tube by fitting a Mickey button which is a valve that is attached to his tummy.  After Danny returned he was really pale and just looked really ill but despite being off colour and his heart rate being up he was ok.  That said this week he has gone downhill when yesterday he had a massive episode which meant he had a major desturation.  When the doctors checked out his airway with an endoscope this showed that as he was breathing his airway was closing around the bottom of his trachy tube and stopping him being able to breathe properly.  This left that with a number of questions as to what can be done to resolve the problem, one suggestion was to put a longer trachy tube in to stop his airway from collapsing where it was. This was still being debated when he had another episode this morning and once again the debate started again to see what actions could be taken to help prevent this in future.  Later in the day the ENT specialist came to see Daniel and said that the new bivona tube that Daniel had fitted last week was not as long as the previous one so an slightly different version has now been fitted and Daniel seems to be ok although time will have to tell on this one.  There has also been talks about Daniels discharge, but this process is unlikly to be a quick process as there are a number of agencies that are involved in his discharge and it is likely that changes will have to be made at home in order to make it suitable for Daniels care.  To this end I have made a bet with Daniels discharge nurse that he cannot get Daniel out before his first birthday which is on the 7th July 07, if I lose this bet then for the first time I’ll be happy to loose. So here we are once again worried about Danny following some very serious episodes.