Feeding didn't go as planned. I was hoping that oral feeds would be started and go well. I tried some custard this morning. He had 6omls via a syringe but the gagging started again. I decided just to leave him a while. I wanted to go home after all.
The physio came to see him this morning again and his chest is sounding a lot better. His nose is pretty clear as well so I was happy for us to go home. He is hydrated, chest and sinuses aren't too bad. The gagging and diarrhea well that has been with us his whole life and if we had to stay in hospital we would be there for another 40 days.
Ouma Huipie popped in for a little visit which was a wonderful surprise. Jason stank her out while she was visiting - sorry ouma :-) Always great to have ouma around, she knows and understands what it's like having a sick child and being constantly in hospital. Love you ouma xxx.
Dr. P asked me what I wanted to do. He said that he was happy with his chest, said he knows that I know what to do with nebbing and physio so it was up to me. Naturally I decided home time it is. We need to try and get back to normal a bit. I need to get back to work and on Friday we have octagam again. I need to go and see the endocrinologist hopefully this week as well. So a busy week for us.
I am tired, this constant in and out of hospital is taking it's toll on me and I really need a break and more importantly so does Jason. Bruce has been looking after Nicole and doing a fantastic job with her plus coming back and forth to the hospital. It isn't easy on us but we are a team and we get through it. The horrible thought is we still have an admission to get through for all the kidney tests. That isn't going to be easy as Jason and myself won't be near home and Bruce won't be able to come and see us and I won't be able to pop home to see Nicole :-(
Anyway I guess we will worry about that when it happens. As Prof B said to me for now we need to focus on his feeding, hopefully get some weight on him and healthy enough for the tests.
I am exhausted so off to bed. Nicole and Jason are happily tucked in their beds. It's great to be home with the whole family again.