Another day another journey

Well, thank you all for your prayers, but today was another hard day.
Wyatt did great last night, he ate even more than he was supposed to. YAY!
But this morning a little before 7am his respiration rate shot up and his oxygen level bottomed out below 70%.
When I arrived at 7 to feed him, he was back on oxygen and doing so poorly that they would not let me feed him. They weren't even going to let me hold him until I promised that if he got worse I would put him back. I got to hold him for 30 minutes. He was still breathing really fast and they had ordered another chest x-ray. I spoke to the doctor and she was very reassureing saying that he was getting close to being ready to go home but that having him eat all his feedings for the last 24 hours must have over tired him. They had not put the feeding tube back in yet and wanted to wait till 8:30 to see if he would eat on his own. I had to go home to wake up the kids so I left and said some prayers.
When I called at 9:30am he had his tube back in. They had tried to feed him but he choked immediately so they had to do the full feeding through the tube. They took the chest x-ray and it looked a little hazy but not bad. So all that was left to do was wait and see how he did when I got to go back at 12:30.
I walked in at 12:30 expecting to nurse but was told that he was too worked up to nurse but if we could get him to calm down (respiration rate below 60) I could try the bottle. When the nurse checked it was right at 60 so she let me try.
While I was holding him waiting for him to calm down to eat I noticed that his bottle had changed again to a much slower flow bottle that his occupational therapist had ordered last Friday. I asked about it because one of the nurses had switched him to a different bottle on Tuesday and even after I asked her to change it back she refused. This information sent my new nurse on a hunt for answers. I was very thankful for her. Some of the nurses don't take me very seriously, so to be listened to and to see her take action was refreshing.
She found the day when Wyatt's nurse had changed the bottle from the ordered one to a faster flow and what do you know, it was the day that things all fell apart. He had been doing fine and that day he was on oxygen for the first time since he was a week old, had three different blood tests in two days and two chest x-rays. My nurse said she couldn't say that the change in the bottles was what made all this happen but that it was "quite a coincidence."
I was upset...okay really mad at that first nurse who changed things just because she couldn't find the right bottle and was too lazy to go back and get a new one. But then I was just really thankful for Ashlee my nurse today and all she did to make it right. I now have the authority to tell any nurse "No, you may not change his bottle unless his OT orders it." Feels good to know that I can fight for my son and do it with permission from the NICU staff.
In the midst of all this research and new found authority, he finally settled down. He took the whole bottle and did really well. He was still on oxygen but it was good to see him eating well again. I got to hold him for a while longer and was off to the Ronald McDonald house again to be mommy to Kennedi and William.
His third feeding of the day was at 3:30 and we got him real worked up before we tried to feed him. He does not like getting vital signs or blood pressure taken. He was even mad when I took his temperature. He calmed down at 4 and literally chugged the milk from the bottle. He ate all 45mls in 8 minutes!!! And then he passed out. :-) So I just held him close and sang to him till it was time to go back home.
As of tonight his respiration is getting better and his is down to a very small amount of oxygen being added to his air. He did have to be tube fed at 7 but I think if we had been able to be there they might have tried to calm him down and then feed.
So we are letting Wyatt have a day or two to bounce back from this hard week and then they will reevaluate him to see if they will take the tube out again, etc.
Thanks so much for all of your prayers, encouragement and support. Please keep us in your prayers. And please pray for wisdom for all those taking care of our son.

Also I met a really nice grandmother on my way out of the hospital yesterday and her two year old granddaughter, Lainy, is in the ICU with brain cancer. They don't think that they can do anything for her. I can't imagine the agony that their family is going through to see their sweet daughter go from full of joy and energy to being confined to bed and struggling to survive. God knows what is to come in their lives, please pray that they will draw near to him in this time when nothing makes sense.