I explained to the Dr's that in fact Ethan had a swallow assessment at that very hospital in August and it was determined that he could swallow and was not aspirating his Saliva. I explained that yes while Ethan did have a difficult time in NICU they key was he had come off the ventilator and just needed oxygen support. I explained that they perhaps they needed to disregard his previous problems and see them as problems that he has overcome. I explained that in relation to his aspirations and previous PICU admissions he needed a Nissens done, which is why we were there in the first place. I told them I felt it was their slow response in getting Ethan the IV meds he needed on admission that caused the current problem and that while previously at GOSH I had agreed to a DNR that it was a different situation we were dealing with now. I told them I felt he needed ventilating and though I understood it was backwards step that i wanted everything to be done that could be done, if once that had happened and he did not improve we could have a discussion.
They asked if I had anything else to say and I replied yes! Move my baby to Great Ormond Street this morning!
I went back to Ethans side and he was back on conventional CPAP as the hood was not working for him. I again was holding the mask to his face and we could not get a constant SATs reading. The readings when we did get them were high 70's and things were going downhill. Other Dr's were on the ward going about a patient check going from Bed to Bed. I called to them to get their attention but was told to wait my turn.
At that point as they would not say what they were intending to and did not tell me if they were going to ventilate I didnt know if they were intending to do anything. I went into the hall way as the Dr's were doing something on another child. At that moment Ethan's surgeon (Simon Phelps) came running down the hall way skidding to a halt in front of me. He had last seen Ethan, healthy at 4pm on Friday and was planning to do his Nissens that afternoon. He told me one he was at a clinic at another hospital when one of his registrars called him to tell him she was concerned about Ethan. He had abandoned his clinic and had raced to The Royal London. He skidded to a halt in from of me and just said "Nic what the hell is going on?!" By then we knew each well enough for me to refer to him as Simon and him to me as Nic. I gave a garbled and somewhat fraught account of the past few days and explained I did not know what was happening now but I had asked for Ethan to be sent to GOSH and I wanted him ventilated.
He asked what was I doing in the hallway and I told him I wasnt allowed in at that moment, and he rushed past me onto the ward. In the meantime I attempted to go up to the NICU to chat the Dr's there who knew Ethan so well and who had helped Ethan so wonderfully during his stay. Sadly I was told they were not around.. I was shaking with fear and anger.
I went back to the ward to find a Dr who had previously looked after Ethan at St Mary's but was now working at Royal London. He looked at me and went "its you! " He said he did not remember Ethan up until that point but recognized me. He said he agreed with his superiors assessment and that he felt we should not ventilate Ethan but let nature take it course, that said he added he would ventilate Ethan if that's what I wanted but he felt I was prolonging matters.
I told him to do what ever Ethan needs to stay alive and I wanted Ethan moved to GOSH NOW! Apparently Simon had already had a word and had insisted that they ventilated and was already on the phone to GOSH to find a bed, but that he may need to be moved back to St Marys.
I was calmed down when I realised they were ventilating Ethan and knew the drill by now. So I said I was going to grab my things and come back, only to be told by the ward nurse that Ethan may arrest during the tubing and they will not bring him back so not to go any where!
I stayed outside and cried and cried as I had never been told that before. I can read heart monitors well by now and could not see any indication that was an immediate issue. 5 mins later I was told it was done so I first went to the market to get a new suitcase with wheels before heading back to my room to pack up.
As I got back to the lift a Woman stopped me to ask if I was the lady from Friday night. I told her I was and was waiting to be told off for keeping everyone awake. She told me she had heard what was happening and her and another mother did not sleep at all that night for worry. She said she didnt know who was going to hit the Dr's first, me or her. She asked how Ethan was and I shook my head and could not say much. She gave me a cuddle and told me she thinks I should complain and she would back me.
I went back to the PICU Ethan was ventilated and properly sedated and we were waiting for transport to GOSH.
I left my bag in the Dr's office (didnt give them the option just walked in and left it there) and then went to see the American lady. To find her cuddled up in her sons bed and her husband sleeping on chair! I was shocked and said I thought you had some where to stay and they explained they felt I needed the room more. I hugged them and told them we were off and managed to speak to the Charge nurse from Friday on the Gastro ward to thank him for his help. All he said to me was "you was right to demand PICU".
Then the CATS team arrived and I was relieved and off to GOSH we went.