Stormy nights

I know it’s been some time since the last posting but things have been a little strained over the last 5 days.  Daniel has taken to throwing large strops which in the case of most kids is an annoyance, however in Daniel’s case it means that the pressure in his chest increases beyond that which is being supplied by the ventilator.  The result is that his airway collapses and they end up having to “bag” him back up and on a number of occasions they have had to do chest compressions to get him back, we were told on one occasion that his heart had stopped but we don’t think that was the case or at least that is what we are telling ourselves, in the last few days he has had about 5 of these episodes.  Julie has also had discussions with the staff over the best way to handle Daniel when he has one of his episodes.  The policies between the neonatal unit and here on PICU are very different and, as such, Daniel’s handling have been very different.  It has now been agreed that when Daniel is handled for nappy changes, suction, bloods or anything that he may not like his oxygen is increased to try to avoid one of his episodes, while this will not always stop them it should help to prevent some of them.  They will also try picking him up for a little cuddle as this helps to distract him from throwing the strop and to concentrated on something else. Over the weekend he also managed to pull out his gastrostomy tube, not the nicest thing that you could see especially as it has been infected.  So the surgeons were called to replace it back in, not too hard a job but not very pleasant for Daniel.  He has also managed to pull it out again so once again the surgeons had to be called, since then there has been no bile from his tube which could be good news in so much as his stomach is passing the bile through his body like it is supposed to.  However, give Danny’s track record we dare not to hope that things are on the up but it would be nice.  Contact has been made with London this week some information has been faxed down to them, at present they are waiting for a response to this so that we find what is happening so we’re still waiting on this one. The play specialist has also been to see Dan this week to try and provide him with some stimulation to help him develope more as he has never been away from hospital to enjoy the stimulation that we take for granted that our kids receive. So following a reletively settled day today we can only hope that he starts to settle down a bit for his own sake at least.