3:00pm: The oxygen is back up to where it was yesterday and they have the NO down to 5 PPM. This will be weaned over the next 24 hours assuming Reid tolerates it. The doctors don't think this is having much effect on Reid, but they are taking it slow regardless.

He had another desat this afternoon around the same time he does every day (we think it may have something to do with his circadian rhythm). He got as low as 83, but has been coming up since. He is currently satting 91. We have noted a higher heart rate than yesterday - it is around 140 now as opposed to about 110 yesterday. Not sure if the new drug has kicked in or not, but they ended up giving chloral hydrate again to help calm him down. We hope that as his heart rate comes down, his sats go back up.

12:00pm: A new doctor took over today and there is now a new plan of action. It is good to have a new set of eyes, but it is always hard to get used to something different. Over the past few days, Reid has been starting to wake up a little bit at random times of the day and think that he is building a tolerance of the sedatives that he is on. Today, they replaced ketamine with dilaudid, which is stronger and should help him remain 'out'. There have been times when Reid destats and we think it is him waking up and trying to breath against the oscillator. They have been giving chloral hydrate as needed to help out, but the doctors don't like giving this as it is a 'dirty drug'. The new drug should alleviate having to give something extra.

The other change they made today during rounds was to no longer actively wean the O2, but rather wean the Nitric Oxide (NO). He was on the maximum of 20 parts per million (PPM) and they have now weaned to 15. Usually they like to get this out of the way before switching to the conventional vent, so we were surprised the other day when they told us that we would still be on this after the switch. I think this plan is more in line with what we have been told in the past - so we will see. Usually kids have no problem weaning really fast on the NO... that is until they get to about 2 PPM. From there, it usually can take awhile.

9:30am: Another good night for Reid last night. And a solid night of sleep for Kristen and me. His mean pressures are down to 22 where they are going to hold. If they happen to do any more weaning, it might go down to 21, but I think they are at a level where they want to get before switching over to conventional vent. The biggest thing they are going to work on weaning now is his O2.

His CO2 was 37 and a pH of 7.45. The pH was a little high, but still in the acceptable range. If it gets any higher, they are going to wean his "Delta P" which is the "wiggle factor" on the oscillator. The wiggle helps blow off his CO2, which directly effects his pH levels. His body is used to having a higher CO2. His O2 was down to 79% and he was satting in the 97-99 range.

He had another xray this morning at 4 and his left lung looked a lot better to me. His upper lobe looked to be quite a bit more open than it did yesterday. His cysts didn't look like they had grown at all. But this is just my reading and will wait to hear from the doctor later this morning for the official word.

We are moving in the right direction. Slowly but surely. But as the old saying goes, "Slow and steady wins the race".