The Story of Saturday January 23rd - Our Visit with Reagan

I wish I could tell you that our visit with Reagan was filled with just as much good news as our visit with Landon.  I had mentioned the other day that for every two steps forward with Reagan, we take one step back.  Well lately it has been one step forward and one step back.  He is healthier than when he first arrived at CHLA a week ago today, but he is nowhere near healthy enough to begin taking him off any machines.

We had reported the other day that they were going to hopefully wean him off the high frequency oscillating ventilator and place him on a regular vent (like he was at SJRMC, like the one they just removed from his brother), but it didn't work.  They started to reduce the amount of support he was receiving from the vent, but he just did not like it.  They had decreased the amount of O2 he was receiving from the nitric oxide machine but he didn't like that either.  They had decreased the amount of dopamine he was receiving for his low blood pressure, but he didn't like that either.  In fact as we were sitting there, his MAP dropped below 40 so they had to double the amount of dopamine he was getting.

Reagan is going to be a much longer work in progress than his brother.  Basically, everything they do with him has to be done in the baby-est of baby steps.

Where with Landon we are looking at about a week or so to bring him home, with Reagan we are looking at about a week or so before we even begin to look at getting him to a point where we can bring him back to SJRMC.

Here's a picture of Reagan, just hanging out, I wish I could hold him.....

Hillary and Liza are headed down to CHLA today, I'm going to go spend some time with Landon today, then go down to see Reagan tomorrow.

Keep your thoughts and prayers coming, Reagan sure could use them.

Phil