Back up to 2

Well, just a minor setback today. Kale's gas this morning was pretty good, but his oxygen % was pretty high throughout the day (high 60s), so they decided to move him back up to 2 lpm on his vapotherm. They did another gas this afternoon and it looked pretty good. He is still retaining quite a bit of fluid, and this might be causing pressure on his lungs which would explain why he is needing a higher oxygen %.

His weight did go up tonight, up to 5 lbs. 4 oz. This is a pretty big jump, and since he looks pretty puffy my guess is that it's mainly fluid build up.....and the fact that he hasn't had a dirty diaper today probably doesn't help. He's pretty uncomfortable and was very restless and fussy tonight, which is not like his usual demeanor. They are going to give him a suppository tonight at midnight if he doesn't poop before then. Poor guy :(

I spoke with his cardiologist today, and he is very happy with how well Kale is doing. He reiterated the fact that as long as Kale's heartrate stays where it's at then he would be able to hold off doing a pacemaker for a few years, or at least until he is more active.

Kale's BMP looked better today, that shows what his hemoglobin was at, and so that means the blood transfusion helped and got him back up to where he needed to be. They will test it again in the morning to be sure that he's still in the right spot with that.

We're hoping tomorrow brings a little bit more of a peaceful day for our little man, and hopefully he can rest up a bit and go back down to 1 lpm in the next few days!