Arrival at GOSH

Tuesday 12th December

There was a long handover between the two teams of doctors when we arrived this evening. I was told that I could stay but I was clearly in the way and so I waited in the parent's room after being asked a third time whether I wanted to wait outside and get a drink. When Matt arrived, we were told that we could go back in but that the nurses had just handed over and that the new nurse was doing all her checks, etc. I asked the nurse whether Grace was likely to wake up any time soon, knowing that she had been sedated and muscle-relaxed for the journey, etc. The nurse gave me a mini lecture about how they don't allow children to wake up and trash around while receiving this type of treatment, etc. Matt and I had never felt more unwelcome and I couldn't bear to stand in that room, even though we just wanted to be near Grace - we left after only a few minutes. I phoned a college friend who is a doctor and explained what had happened - I was SO upset. She said that I should go back in and explain how we had been made to feel and speak to the nurse in charge if possible. I could tell that Matt was just plain angry! As we started to go back in, however, the nurse and two of the GOSH doctors / Consultants involved in Grace's care came out to speak to us. They went over Grace's history with us again but spoke to us as though we were idiots. Matt (politely) told them that we understood words like 'oxygenation' and didn't need to be treated like children, i.e. we wanted the facts, information about Grace's condition and treatment and to be kept informed at all stages. The doctors accepted this and started to treat us a little more how the Evelina doctors had. The upshot seems to be that they still don't know quite what has caused Grace's lung condition (ARDS - Acute Respiratory Distress Syndrome) but that they will continue to investigate this. They do not consider that Grace needs ECMO yet but will continue to monitor her as had been done at the Evelina.

We are given an Emergency Night Room in a building nearby to GOSH called The Italian Hospital. It is hot and sticky and uncomfortable though we try to get some sleep in order to be with Grace tomorrow.