The Story of Friday January 22nd - Part I

I'm at CHLA waiting to go in and see Reagan after Hillary and I got to hold Landon this morning (more on that in a bit).

When I got here, I was all set to go in to see Reagan, but there was a baby that just arrived here at the NICC and he is really, really sick.  They are doing surgery on him (the new arrival, not Reagan) right now, so I won't be able to go in and see Reagan for another hour or so.  The new arrival is in a real bad way, I offered my thoughts and prayers to his parents as they were leaving the NICC, please do the same.

I did get a chance to talk to Reagan's nurse for a bit, a little update until I can go in and see him.  "Slowly but Surely".  That's where we are with Reagan.  Hillary put it best in that for every two steps forward we take with Reagan, we take one step backwards.  He responds well to minor decreases to the support, but it is a fine line, too big a drop in just about anything and he doesn't like it, so they are taking things in miniscule steps.  His NO is down to 5%, it was at 20%.  They had to sedate him again yesterday because he wants to fight the ventilator.  (Again, that is kind of a good thing, it means that his body wants to do what his body was made to do, breathe normally, it's just that his lungs aren't ready to support it yet.)  The plan is to slowly (very slowly) wean him off the nitric oxide, and to slowly (very slowly) wean him off the high frequency ventilator so eventually we can get him on a regular ventilator.  Once that happens, we start to wean him off that and get him breathing like normal.  Baby steps.

I'll update later tonight when I get home.

Meanwhile, this morning we got to hold Landon.  I'm crying just typing this, I can't explain how wonderful it was, especially for Hillary.  Here's a picture of Hillary and Landon.....

Here's a picture of me holding Landon.....

And here is a picture of the three of us (all we need now is Reagan and Amanda and we have a Christmas card).....

Here's the video of Landon and Hillary.....

And here's the video of Landon and me.....

And here's one final picture of Landon's right foot, because he has a crooked toe just like his sister Amanda.....

Landon is doing really, really well.  The nose tube for oxygen is set at 21% (just like normal breathing air) and the chest tube was moved so that now it goes in through his nose instead of his mouth.  They gave him some Pedialyte last night and he liked it, and they gave him some breast milk (melon juice) last night as well.  Won't know how he tolerates that yet until later today.  So good news on the Landon front.

I'm getting ready to go in and see Reagan, will update later.