Well it's been months since I last posted. Trinity-Storm has been keeping exceptionally well considering we are in winter. She has had a few ear infections and the odd cold, but that's probably the worst of it. We did go to hospital once with bronchiolitis but it wasn't very bad at all.
We went back to Starship in May for a check up. When we went up they were thinking she wouldn't have improved and they would need to change her pressures and settings on her CPAP machine. The first night there they monitored her sleep without her CPAP and then in the morning decided she didn't need CPAP anymore. Her CO2 levels were too high so they also decreased her oxygen levels right down to 0.125 and she has managed to maintain that level ever since. The docs also think that possibly within 1 year she could be off oxygen altogether. They think she has done remarkably well and has grown so much which has helped her lungs significantly. It's good for us to have a time that we can aim for, we have never ever been told she would ever come off oxygen so it's fantastic news.
Our major problem right now is getting her to eat again. We had an appointment with her surgeon, Professor Pringle earlier this week. He is so funny he said he is going to be an ostrich and bury his head in the sand. He doesn't want to do anything else to her and make unnecessary holes in her if he doesn't have to. But she can't have a feeding tube forever, they aren't long term solutions so we have to look at other options. Well there is only 2 options, 1. get her to eat orally and drink bottles (she can't drink bottles, the fluid goes down the wrong way) 2. have an operation. He will need to do a fundoplication and a gastrostomy. Basically that means he will band off the little bit in her tummy which will stop the reflux and then make a little opening that goes from her outside straight to her tummy. So she will get fed through a little port opening rather than down her nose. Her dad is dead against this and can't see the logic in it, but I can. We see Mr P again in late November and by then he would've spoken to her paediatrician about how long to leave her with the feeding tube before they decide it's too long. She will be 2 in November and I can't see her eating anytime before then.
The other thing Mr P mentioned was about her vomiting, obviously she isn't absorbing anything that's in her stomach. There isn't any food going in there but her saliva she produces during the day is but it isn't getting absorbed. That has always been 1 of her major problems. Whenever she did eat it would come straight back up. So there may be something else he has to do at the same time as the other op to try and sort that out.
I'm not sure when he wants to do the op, thank goodness he can do it in Wellington though and we won't have to go to Auckland. But he could possibly do the op in December or early next year. I think he wants to put it off for as long as possible because it will be trickier than a normal gastrostomy, she has already had surgery around that area and the adhesions may cause a problem.
But whatever he decides to do we trust him with her life. He is a fantastic surgeon. I'm not in a rush for it to be done but it would be nice to get it over and done with early next year. But in the mean time I will be trying everything I can to get her to eat.
