April 27

The last few days have been trying. Max is still on a peds floor, but he is still mostlikely going to be moved to the PICU. He is making progress but not as fast as some of the doctors would like. 

Yesterday we upsized his trach. This is in hopes that if he needs more ventilation that he will be able to receive the amount of pressure that is needed. The smaller trach  was to little to have been able to give him enough support.
After they changed his trach they changed the way they were aiding his breathing. It FAILED. His oxygen skyrocketed. His work of breathing increased and rate of breath increased. After less than an hour they put him back onto the high flow nasal cannula. It took all night but he is back to where he was yesterday. They suspect that some of his lungs collapsed during the change.
I was irate. From the beginning I told them that he doesn't do well on trach collars. They didn't listen, that is what made me so upset. After that episode I packed up all our stuff thinking they would move us to the PICU (that is what they have been pushing on us the whole time), they didn't. Needless to say we are frustrated, confused, and a little upset.
We still have no real answer to what it is. If it is a virus, infection, kind of pneumonia. We just have to wait and see how he responds to meds and neds.

I haven't been able to see Wes or Mark since Tuesday. Wes hasn't been 100% the last few day. Today Wes was diagnosed with pneumonia.  Mark caught it early so he doesn't need to be admitted. But, It means we can't have contact with them. We can't risk exposing Max to any other germs.

I am so sick of this chaos. I am not good with chaos. I like control. This is really getting old. I just want my family together.