Cruisin’ down

Well today Danny has had a really good day, he’s been out for a cuddle with mum which as always he really enjoyed.  He’s done a little playing though he gets a little inhibited by the ventilator pipe but he still does his best.  He’s been out in his rocker chair and he seemed really happy just looking at his Tigger Gym, he’s also been smiling and managing to smack himself in the face!!  Then he had his RSV jab which was not so nice; RSV stands for Respiratory Syncytial Virus. On the down side though his gastrostomy and jejunoscopy site has become infected as it is oozing.  The gasterentorologist came to see him again today as she has every day since he’s been at the Queens, although while he was at the City he was only visited once a week.  They are happy with his progress at present although he does have a bacteria infection in his gut which he is going to be treated with anti biotic’s for.  We have come to bed this evening a little concerned as Daniel’s nurse tonight is not a PICU nurse but is in fact from the overnight stay unit, this obviously worries us as Daniel has a tendency to take a severe turn which she may not be used to.  A very difficult thing asking someone to place one of their most precious things in hands that you are not sure can hold safely.  Also today Julie ran into one of the mum’s that she met while on the City neonatal unit and she is currently on the neonatal unit here at the Queens.  She was telling Julie of her experiences down on the neonatal unit it and it transpires that some of the problems that we had on the same unit are still there, one in particular is the fact that the fluorescent lights are almost always on regardless of what time of night it is.