It has been mentioned quite a few times "why didnt you call" and those sort of comments, relating to when things were tough when Ethan was in hospital. The simple answer is I could not bear the thought of putting any one else through what was happening. More so when Ethan was in GOSH for the first time, I did not want any one to have to witness his deteration. I felt it was horrible enough that I had to see it all happening, but by then I was already semi used to hospitals. I thought that anyone else with me would have to go home with these images and I could not bear it. The other thing I found hard was simply telling people "it looks bad" or even worse "we have been told he is going to die".
Ethan did look very very ill at GOSH April 2010. His hands and feet were blue where his circulation was not "right". He felt freezing cold and for most of the time he would have episodes in which he needed to be bagged in order to regain his levels of oxygen. Ofcourse he had the moment when the O2 levels did not increase for a very long time. The moments when SATS of 70% meant he was behaving himself (They are supposed to be at the very very least above 90%). But through the horror there was moments when I laughed, and smiled and yes danced in his room with the nurses. There was times when I felt like I was being tortured, and I just wanted a resolution one way or the other. There was so many ups and downs at GOSH many of them in the same day, same hour even.
The episode he had after GOSH, when he went to St Marys Hospital for the first time was also scary, though slightly less so, but only because I had already got used to scary at GOSH. His temperature was sky high, and I remember him having what looked like little fits but were Rigor (shaking due to high fever). He needed very high sedation, as he was so used to it by then, so until they got on top of it he would have moment when he woke up and would fight to get the machines off of him. Heartbreaking to see, though I remember loving the strength he had in him.
Back in October last year when Ethan was on his way to critical care in Southend Hospital in order to be ventilated (On his way to St Georges Hospital at this point) I walked along the side the cot as the nurses pushed him down the hall to the CCU, he was so distressed, kicking and waving his arms but too weak to cry out. Walking behind him when the team for CATS (Childrens Acute transfer service) was wheeling him inside him POD, on a portable ventilator to the ambulance to go to St Georges you see people move out the way. When they see its a baby you here them go "Awwww poor little mite" and then you see them look at me, realise I am his Mother and they give this sympathetic smile that I remember making me feel like I was going to burst into tears.
Did I ever feel like walking away? Never. Not once. Would I want any other child to go through what he has. Short answer, NO. He has been through a hell of lot, more then what I have put on here. His body is covered in scars not just from operations but from all the lines he has has inserted into his body.
Through out all the trauma I always remembered that I had to smile, I had to carry on and try and be as normal as possible. I feared the unknown so I researched everything I could possibly research. Forewarned is forearmed after all.
I never really