The Story of a Good Day (Tuesday the 19th)

Sorry for the delay in updating, I ran around so much yesterday that I just didn't feel like typing.

Tuesday was a good day for Reagan and Landon.  Hillary and her mom went down to CHLA to see Reagan and had several really good conversations with his nurses and his doctors.  Reagan is getting a little bit better with each day.  Between the high frequency oscillating ventilator, the nitric oxide machine, and the four doses of surfactant they've given him, his O2-CO2 numbers are improving, which means that he is getting better.  There is no more talk at all about ECMO, or even talk of giving him more surfactant.  More on that later.

I was glad that Hillary got to go down to see him, she hadn't seen him since they hooked him up to the machines to take him on the helicopter down to CHLA early Sunday morning.

I spent the day visiting with Landon and running errands in between visits.  Landon is slowly improving as well but there were concerns about the treatment path they were taking with him.  We know that the boys have real bad cases of RDS, and that Reagan has the PPHN on top of it.  The question was, was it something beyond just being premature.  Most of the doctors we have seen didn't understand how, even though they were five and a half weeks early, they were so big, 5-7 and 6-13, yet have such weak lungs.  Was there something causing it that they haven't found.  After running about a gazillion tests they were down to pretty much two options, either Reagan's lungs weren't producing surfactant, or despite their size, their lungs weren't mature enough to produce enough surfactant to support breathing.  (For a really fascinating article on surfactant and babies, click here.)

So what that meant for Landon was that they were afraid to take him off the ventilator, because if they determined that Reagan wasn't producing surfactant, and Landon didn't do well off the vent, then it would be much harder to bring Landon back from his problems if he had the same condition as his brother.  (Does that make sense?  I've typed that last paragraph about a dozen times.)

So the doctors at SJRMC and CHLA talked and they have 99.9% determined that Reagan is producing his own surfactant, which is really good news.  Now, the doctors at SJRMC can be a little bit more aggresive in treating Landon.  And in fact, that is now their plan, slowly weaning him off the ventilator so he can breathe on his own.

Here are some pictures of Landon.....

And then, check out this video of Landon with his eyes open.  And yes, he is a little yellow, the bright white light you see is the phototherapy light for his jaundice.


Like I said before, one of the special things about spending time with Landon is that he's not so heavily sedated like his brother Reagan.  Because Reagan was trying to breathe on his own (fighting the ventilator), they have to keep him pretty sedated.  Landon isn't, so he responds to touching.  When I touch his palm with my finger, he grabs me, and for a little while there we are holding hands.  With Reagan, I would have to open up his fist, put my finger in his palm, and then have to close his fist so we can hold hands.  The other special thing is that because Reagan is in such a critical environment, I have to wear a surgical gown, surgical mask and gloves to touch him.  With Landon, we don't have to, so you can actually feel his skin.  Can't wait until Reagan gets better so we can hold hands.

It was a really good day, first one in a while.