Being thankful tonight.

I have to put his bed flat so he can roll to his favorite side.

A pic of my nice, quiet, corner picu room.

I have gone through a whole shlew of emotions the past couple of days. Adjusting to the trach has been easier than I expected. And I haven't freaked out yet when he cries and nothing comes out. Its just that Jax hasn't been in the picu longer than one night in about a year. So being down here for a while just sends memories flooding back, and remembering the death and sadness this unit brings. Yesterday morning when I came in, walking back to Jaxsons bed which is in the corner. A teenage boy across from him was crashing. I walked in a little after the chaos started. They had already brought echmo in and the surgeons were gowned up and his room was roped off. He is still on echmo tonight, but I hate every time I walk back to Jax bed I wonder if he'll still be there. In our picu they have a little butterfly that they tape to the door or curtain if a child is passing away. Its a secret code to leave that room alone, that a family is grieving.

I'm so happy that Jax is doing good, and its definitely nice to not be the sickest kid in the unit. To not be the one were the crash cart is being dragged to your bedspace, and the doctors are running all around. We've been there, done that. Also when everything is quiet, there is no running, but your baby is so sick that when the attending walks in and asks, "how we doing", your nurse says, "not very good". And the attending responds with "Thats what I hear". No one is running around. But your baby's vent settings are maxed out. They have the oscilator waiting outside his door, and they tell you he probably won't make it. We've been there done that too.

I couldn't be more grateful that my baby is so strong, and I know this probably won't be the last time he gets scary sick. We took the other boys to see Where the wild things are today. They bawled their eyes out when the boy left his friends and went home. You know what the first thing I thought was?

Oh my gosh what if Jaxson dies? My boys would never be able to handle it. Their grief would be beyond managable. I don't want to even think that, but I also don't want to be unprepared, because many people still don't think he has a very long life span. We have to ignore what all the doctors say, because doctors aren't always right. I would love to say we just enjoy him all we can while we have him, but I can't because I don't want to think of not having him, its to unbearable.
I just can't wait to get out of picu and up to the floor.