Wait

As I mentioned a while back, my nephew was born 6 1/2 weeks ago.
He was a little early and needed a little help. At first it was his legs that were bothering the doctors and also his jaw which made it hard for him to eat since it is a lttle recessed. He had cramps, wheer his body would just cramp up all of a sudden and so they decided to transfer him to another hospital about a week after he was born. Then he started to have seizures and after a bunch of tests and CT scans they determinedthat they were epileptic and staretd to give him medication for that. He then started to have trouble braething. He was able to breathe but he didn't get enough oxygen in his blood so he would have a little oxygen mask thingy close by just in case in addition to his feeding tube and the other monitors. All in all he was doing good though and grew etc. They were talks about him being able to finally go home along with all his hardware, but that wasn't such a big deal. His parents were tired of the hour plus drive each morning to the hospital and my brother had to go back to work too. So then, when they were only waiting to finally get all the monitor rentals approved by the insurance company my little nephew stopped breathing. And his little heart stopped too. Luckily a doctor and his mom were around and it only took seconds for him to be back or whatever you call it, but after that he obviously wasn't going to go home and they transferred him to intensive care, where he has been now for about a week. When I talked to my brother last week he said that he was getting a little bit more oxygen but he was breathing on his won. They didn't want to incubate him because then he wouldn't breathe by himself which is not good for newborns since they are still learning. On Friday though they did decide to go ahead and give him a Tracheostomy. He has a tube going through his throat in his lungs, but as far as I know he still breathes by himself.
The disturbing thing is that apparently my brother and his girlfriend told my parents that they would not want him to live on life support only, if that is what it will be for the rest of his life. Now, I know you discuss those things, especially in those situations, but all I keep thinking about is that I haven't even seen him yet.
I hate being so far away. Of course I hardly get to talk to my brother because they are constantly at the hospital so I get second-hand information from my parents and then it's delayed too. They talk at night, so during the day for me, but I have to wait until the next day.
It unsettling too, because the doctors can't make a diagnosis. They know he has something but all the tests they have done so far ad all indications don't lead to a standard disease. He has nothing genetically wrong with him, since they checked his genes and made sure there is no birth defect, but they just don't know, so they can only treat the seizures and help him breathe, but they can't treat whatever makes him sick. I would hate being a doctor then.
So all I can do is sit here and think and look at the few pictures I have and wait.