Still smiling
Posted: November 28th, 2006 | Author: Rob | Filed under: Baby Brussel | No Comments »
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 Read the rest of this entry »
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 
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 
So what has the last couple of days had in store for little Danny. Well there is still no news on when he will be going down to London, the surgeon at Nottingham has been trying to contact his counterpart in London but he is away at the minute so contact has yet to be established. Daniel in himself was quite good for most of the day but during late afternoon he started to have couple of his episodes. These were made up of dropping his heart rate and having a desat, this meant he required “bagging”, the equivelent of “tom thumb” from the neonatal unit, to bring him back up. He was just finishing off his second episode when Tom and I arrived. When I walked up to his bed I knew something was wrong as there was a number of doctors & nurses around his bed and Julie was crying. I asked Julie what was wrong and 
Today has seen a few things for our little Danny, he’s been going down on the pressures for his CPAP which is great news. However he has been really sicky today and has been sick quite a few times, which includes once on me and once all over Julies white jumper!! He also had quite a major desat just before we came to bed which meant he needed bagging. Here on the PICU they actually do bagging rather than the “tom thumb” that they used at the City. What was really cool was today I was able to get Danny out for a cuddle which 
The world is a cruel place to live in. I had a harsh reminder of this when we got back to the Queens a couple of nights ago. We were driving into the multi-storey car park and there was a man in a hooded coat loitering between some cars. When he saw us drive in he tried to look inconspicuous but it just didn’t work. It was clear why he was hanging around and we’d obviously disturbed him as when we walked down there he’d gone. But then this got me thinking of all the special people we have around us each and every day. Firstly we have our families; these people will usually try and help out in whatever way they can, in our case they have helped out so much with Tom and the other two we’d be lost without all of them. Then there are our neighbors; 
Dan’s been doing really well since he’s had his trachy done on Thursday morning. Yesterday they were able to move him from being ventilated where it was doing the breathing for him to now being onto CPAP where he does the breathing and the machine simply gives pressure to him. Since he first got pneumonia he has not really bean on CPAP apart from a very short spell he’s been ventilated so to now be able ot move onto CPAP is amazing. The other major change