"Tomorrow brings another pediatrician to work with. We are hopeful that the plan will remain the same and Mason will start responding better to the medications than he has over the past few days."
Well, there's hope, then, there's reality. We met the new team of doctors just after Mason fell asleep, so we moved Rounds into the hallway. The first thing out of the attending pediatrician's mouth was "We're going to increase Mason's fluid volume and are considering going down on his lasix." Ok, maybe it wasn't the very first thing, and maybe that's not exactly what came out of her mouth, but that's basically what she said.
As Bill says, I must have looked like someone just took a crap in my mouth! We were floored! "Excuse me? Did we hear you right? Do you know anything?" That's what I wanted to say, but what we actually asked was whether or not she had discussed this with the kidney doctor. We thought, it might be important, since she's the one running this show, in reality. She assured us she would talk to the kidney doctor and she would talk to the lung doctor to make sure that he became more involved.
Turns out, she wasn't entirely off base in her theory, and by the end of the evening, Bill and I did some talking and have come up with a plan of our own that involves both decreasing the calories/increasing the fluid volume and decreasing the lasix. Unfortunately, over the last week, Mason's sodium level has been climbing. Now, Bill pointed it out to the team last week, but it was still in the "safe" zone, so they told us not to worry. Today, it continued to climb and was getting into the "dangerous" zone. The pediatrician today was worried that it would continue to climb with his very concentrated formula, so to avoid creating new problems with Mason's heart, brain, etc, she wanted to go back to the formula that had a safer level of sodium.
Well, then, we got to thinking (I know, sometimes that can be dangerous)...When we came in 4 weeks ago, one of the first things they did was stop the sodium chloride that Mason was taking because the extra sodium was likely causing him to retain fluid, which contributed to his increased oxygen need. See where I'm headed? So, if the extra sodium was bad then, and his levels are even higher now, then maybe, just maybe, the sodium in his system is contributing to the problem we are having now - we can't get the fluid out of his lungs because the high sodium is causing him to hang on to it. So maybe the doctor does know something after all. She assured us this morning that she doesn't think the sodium is the magic bullet, but maybe it's a contributor.
So, we got to thinking even more (I'm pretty sure we're at risk for head explosion soon!)...We started looking back at his lab graphs (yes, I graphed them) and compared to the blog posts in which I mentioned his current oxygen needs. It appears, to our eyes at least, there's a pattern. There's a calorie count, sodium level, steroid level, and lasix level that all jive with when Mason was doing well and back to baseline a couple of weeks ago. So, we're going to put it all together for the team and the lung doctor tomorrow and present our case. Maybe we're on to something, and maybe not. Regardless, this has given us a new hope that we haven't had in several days. Talking about the the reality of the trach is pretty defeating. It's nice to hope that there may be another way out!
Tonight, Mason's asleep, saturating well, but with an elevated heart rate (140's) and needing more oxygen than baseline (~3.5L). Somehow, this evening, he was happy, flirting with the nurse, playing with his toys, and splashing in a bath. He is amazing!
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