During this time I managed to get Ben into a local school so he didnt have to witness everything on PICU.
Once off the ventilator Ethan was still going through a horrendous withdrawal from all the drugs, and he hated cpap which meant he just was not sleeping. In the end the decision was taken, with my approval to take him off CPAP for his comfort.
Ethan was put onto high flow oxygen at a rate of 22 litres he was much calmer and different medicines were tried to help control his withdrawal.
Ethan was moved into his room and he was still detoriating with nightly major desats needing to be bagged (breathed for).
Another week went past post ventilator and Ethan was still not getting better. Then another week.
I was then told what I already knew, Ethan was not getting better, his lungs damaged and if he was going to get better he would have done by now.
On the high flow oxygen he is limited to staying in a bed, his muscles wasting away and he can no longer sit up by himself. He can not move his legs though his trunk is getting stronger, he can prop himself up to sitting but cant sit and play at the same time.
I was then told that the Dr thought in his best interest would be to take him off the high flow oxygen and put him on a much lower flow via nasal canuala which would mean we could take Ethan outside and have a more of a normal life.
With a heavy heart I agreed, and the decision was made not to offer adrealine if his heart was to stop.
All treatments offered would now be palliative.
Ethan goes from pinkish to grey/blue now and is tiring very very easily. We dont know how long he has left and he will go into a hospice next week and hopefully home but I am not sure he will get that far.
His father has still been unable to visit but I am supported by my wonderful partner and my friends and family.
Again we have met some lovely people while in the hospital, and have even met up with sme Dr's that we met way back in 2010 in both Southend and St Mary's!
The truth is Ethan is getting to the point where he will need to sleep all the time, we are nearly there now. When that happens he will sleep and not wake up. I will be there to telll him he is loved so very much.