September 23rd – Still grieving part 4

The medicine to keep James´s duct opened had some side effects. It made him more swollen in the face, more flem in his airways and apnès. It happened several times when I was standing by him. I/we often saw it before the alarm. I gave him a little push as the nurses did. Of course I have never pushed a baby before so I was too gentle. The nurses came over and gave him one he needed :o). Next time I did exactly like them. Well of course he played up to his mummy and he needed a bigger shake. I/we never got nervous or anything, we knew why and he couldn´t be in a safer place. Well at last I managed it myself, I was so proud I could push my baby to breathe. Something I/we could do to help our baby.
Three doctors arrived and came up to me; one cardiologist surgeon, one paediatric and one anaesthetist doctor. The surgeon started talking, for every word he said I fought the breakdown coming over me. Nigel looked at me from James bedside wondering what they were informing me about. He could see it wasn´t anything positive. They had a negative surprise. We weren´t supposed to be surprised since the other staff should have told us the day before, James’s valve was leaking dramatically. They had found out during a scan the day before and no one had told us, now they wanted him to be put on a ventilator so he had time to recover before the operation. The compassionate surgeon kept on talking and all three of them looked worried at me waiting for my breakdown. He said the operation was put forward to Wednesday so a valve specialist could attend the surgery. I could suppress the breakdown for a while, I felt sorry for the doctors since they had to bring bad news as well. Nigel and I walked into the parent’s room and we had a devastated crying burst, holding each other. One mother opened the door she saw us and closed it again. She waited outside until we were finished.
We went for lunch. I called my mum and they were on their way over to see us. Nigel asked if it was ok if he went home to sort out the house. I said of course. I knew he needed a “break” and I was glad I didn´t have to leave the hospital area.
After lunch I rushed over to James, so I could see him before our guest arrived. It looked so peaceful for him.
I met up with Mum (Anna-Lena), Nan Inger and Rosa at the parking area. We went into the parent´s room at IVA to chat a bit before seeing James. I went in with one at the time, starting with James´s Mormor naturally. No one was prouder than me at that moment. So very proud of our beautiful, brave fighter.
We went down to the main building to get a coffee break before they headed back to Höganäs. We chatted a bit and I opened the gift they brought for him. James was equipped with two very nice sets going in blue and green. From my mum he received an extraordinary very dark grey cardigan jacket. It looks really English to me and special. After a while they could see I was too exhausted and they needed to go back. We said our goodbye´s and I thanked them for coming. I headed back to the hotel and managed to hold my tears away until I came inside our room on the hotel. I put out the clothes sets on the bed thinking how really nice they were and how I would love to see him live so long that he could wear them (and longer of course). I collapsed in bed from exhaustion holding the cardigan jacket close to me. I woke up when Nigel came back and we headed our way back up to James so Nigel could see him now on a respirator.
I don´t know how I coped sometimes. But It´s like my emotions got shut off at times for me to be able to cope and to recover. Breakdowns came when I was alone or with Nigel. This day and the day before were two of my toughest.