Yeah For Stability! Boo For Being Pushed Too Hard!

Thankfully, Mason has stabilized once again. Late in the evening last night, he began saturating in the 70's and 80's again when awake and the upper 80's/lower 90's when asleep. We are so thankful for the change for the better and praying that this trend continues.

We did "battle" again today with the attending intensivist. Once again, the push is for making progress on the ventilator settings. Her original idea was to wean the oxygen concentration on a schedule instead of "as tolerated" like we have been doing. Apparently, because we haven't weaned for a couple of days, we are not making the progress that she felt we needed to make. I felt bad, but when the nurse came in to do it, I said "NO!" She told me about the plan, and I was hot! The doctor came in a bit later and explained her desire for progress and we explained back that yesterday was not a good day and we are more interested in a successful wean than a hurried wean. We are also quite sure that despite no changes on the ventilator, Mason is weaning other things. After all, 2 days ago we decreased the steroid and yesterday we decreased the methadone. I don't know about you, but to me, those are big changes for such a little guy. For some reason, they are just interested in the ventilator wean and the other stuff is gravy. I think we all want the same goal, we just have VERY different methods of getting there. We finally compromised on weaning the PEEP just a little bit with the caveat that if it didn't work well, we could go back up. Thankfully, it did work.

Just after she left the room, I realized that they did not make the changes in Mason's steroid that I had asked for. When the nurse asked again, the intensivist said she did not want to make the changes because she wanted to keep moving forward and not go back. Once again, I WAS HOT!! Well, let me give some background. I don't remember if I wrote before, but I created the steroid wean schedule. We have been told by many that weaning steroids is more of an art than a true science. A schedule can be modified based on the length of use, the dependency, and the individual. We know very well from Mason's weans before that slower is better and much more successful. So, I created a schedule and wrote it out for the providers. I even asked the resident to give me the information about how the dosage of the IV form compares to the oral form so that if we should switch, we would not make a dosage change. Well, yesterday, at my request, we made the switch, and guess what, they screwed up on the dosage. They ended up giving Mason the same dose as he was on via IV which in effect created another wean of the steroid. So, instead of decreasing the dose 1x/week as planned, they did 2 decreases 2 days apart - setting Mason up for failure. I WAS HOT! I tried to be nice, but explained very clearly what they were doing and thankfully, without too much push back, she agreed to increase the dose. I'm just not sure why we run into these problems - it is so frustrating! Believe me, it's not that I want to be here longer - I really don't love the tight quarters, the lack of privacy, the miniature bathroom, and the shared shower. I just know that if we go slower, we have some chance at success.

I have never been so strong in my life; in fact, I've pretty much been a pushover for a lot of things. But every day we are here, my spine becomes stronger and stronger. I so appreciate this lesson from my very strong son.

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 11
FiO2: 69%