2:30pm: They bumped Reid up to 5 liter flow and his work of breathing has improved. His respiratory rate has dropped by about 10-15 breaths per minute and seems to be more comfortable. I believe the doctors and respiratory therapists are really getting an understanding of what Reid needs and Kristen and I are preparing to hear the worst news tomorrow.

If we decide to have the tracheostomy done, it seems that he could have it within a week's time, taken to the PICU for a week and after they did the first trache change, he would be moved back to the TICU for about 5-6 weeks. During that time, we would be trained and educated about the care needed for the device, medical equipment would be set up at home and then he could come home.

We feel so alone and mad at the world. The thought of us not being able to hear Reid coo or giggle devastates us. Also frustrated that if we end up down this path, we should have done this 3 months ago and saved some of our time in the NICU.

A bad day for the Elley's.

12:00pm: Seems like we are only taking steps backwards since we have been moved to the TICU. The issue I have with this is that I don't necessarily think that it is Reid that is taking steps backwards because he looks and behaves the same as when we were in the NICU. I think it is the doctors and nurses that are giving Reid more respiratory support than he may need because they just don't know how he operastes. Today, they put Reid on 4 liter flow because he was de-satting into the upper 80s last night. However, the interesting thing is that they will not touch the O2 and keep it at a steady 55%. The part that is frustrating is that when he comes home, he will be on 100%. So, I would think that the O2 should be pushed up when he is de-satting, rather than increasing the flow. It isn't getting us anywhere.

Kristen and I have our meeting with the pulmonology team tomorrow afternoon at 3. I feel as if they are playing their cards so that they are going to force Reid to have a tracheostomy. I called this meeting with the doctors so that I could complain about some of the care that we have been receiving, but I have a feeling that it is just going to get turned back around on us and we will be back to square one again.

I am still waiting for the day when we catch a break...