Brick Wall

Daniel still continues to be well and so is coming on in his development. He walks around the lounge all the time now as we have plugged his ventilator in to an extension and put it on wheels so he just drags it round. He never wants to sit, it is so funny to watch. He has been pulling himself up on Rob today so it is nice to see him progressing.

These past few weeks he has been spending time on his swedish nose which he isn’t doing as well on as he was before christmas. We think this is because of a few reasons, 1) he is bigger so he’s wanting to do more which exerts more energy. 2) The PICU staff have been walking him round the unit which is great and we can see why they would want to do this but it doesn’t help him breath purely on his own. Rob and I did the London Bikeathon when Tom was a baby and had we tried to do the whole 26 miles straight away, well I know I wouldn’t have managed it. It took training for me to do it so Daniel needs to do it at his pace. By all means they should carry him round the unit but give the kid a break, he has been use to assistance for the last 18 months. 3) Daniel only spends the mornings on PICU now during the day and he always goes for a sleep at 11am so by the time the PICU staff have time to put him on it, it’s after 10 already so he does look tired by 11 because it’ his nap time. 4) He has thick thick secretions.

I know Daniel is capable of much more, he just needs the right settings for it to happen. We asked if we could take him off at home as we are not idiots and they don’t get enough waking time on PICU with him, we know our son better that anyone and know when he has had enough. However his consultant said no because he is not managing a hour but there are reasons for this.

On PICU they put him back on cpap when he is slightly nasel flaring. Daniel nasel flares at times due to thick secretions, coughing or just plain standing. It doesn’t necessarily mean he is tired on the nose. I think they would find were they to do a blood gas he would be obsolutely fine when he is slightly flaring because he did this on the neo natal unit. He has had help with his breathing for the last 18 months so he will nasel flare to begin with because he did on the neo natal unit before he got ill but it settled when they pushed him a little. I am not asking them to push him to exhaustion, just give him a chance as he is so frustrated with that machine when he is away from PICU because there are so many more interesting things to get his hands on.

I also discussed with Daniel’s consultant the issue of the other ventilated patient being discharged. According to an external source he was discharged by the parents so I won’t be going to the press just yet but it doesn’t get away from the fact that two ventilated patients were treated very differently and for whatever reason it not right as Daniel has proven he can hold his own with the best of them.