It is going to sound strange, I'm sure, but the milestone days...in which we need to see progress (the absence of which means backtracking), are easier than the days where nothing monumental is supposed to happen. Don't get me wrong. In the moment (uh...hello, D-Day #1!), they are horrific. But when you're sitting around, waiting for the milestone to come on the next day, you kind of fall back into worrying about everything.
Sam was on Nitrous Oxide for about 4 days. During those days, the only thing that was supposed to happen was...to let the Nitrous work. So the stress was to watch beeping screens. To see how his heart beat was, or how many breaths he was taking per minute. Don't even get me started on the oxygenation sensor, which incessantly scares you by beeping when your child hits 95% oxygen saturation in his foot.
Yesterday and into this morning was a milestone day. We were inching towards progress. Last night, I alerted you all to the fact that Sam had been dropped to 2 ppm and the goal was to be off of the stuff by morning. Elisa got some sleep last night (she has gone into the NICU every three hours for 7 straight days. Put that in perspective...That's only 56 straight visits), so I headed in for the 11:00pm and 2:00am feedings. At the 2:00am one, they decided to bring him down to 1 ppm. Highly entertaining. The first nurse adjusted it down and walked away. The machine began to beep. It had settled at a rate of 0.6 ppm. So she adjusted it up a tick. Wouldn't you know that the Nitrous quickly turned back to 2 ppm. The first nurse gave up the ghost, so our regular nurse (the phenomenal Danielle) went to work on the machine. It was almost like there was a hidden camera in it. She would get it set and start trekking back to her station. As she went to sit, the alarm would beep. Back she would come, only to have the alarm settle when she touched the machine. This went on for 3-4 times. Finally, the first nurse came back and made some sort of joke about it being Sam's fault. Somehow, I devolved the conversation into some gender jokes (Sam's a boy, so he's "whateva!) and the nurse's medical solution was just to stop the machine from beeping when it hit 0.5 ppm. So Sam went from 2 ppm to .5 ppm. Okay, then.
When Elisa and I headed in at 8:00am, we were pleasantly happy to see that the Nitrous Oxide machine was off. Sam was now free of the stuff. After turning it off, they had to tick his oxygen from 33% to 35%, and then she took it back down to 33% an hour later. After the feeding (we found out at 11:00am), she had to tick it back up to 35%, where it still stands. The nurse indicated that what they don't want to see is an upward progression. Going from 35 to 37 and then hitting 40% would not be the sign we are looking for. Going back and forth between 33-35% is okay by her right now.
So I'll cautiously say that Milestone 1/5 has been met. He is off the stuff and is heading towards D-Day #2 - the fourth (and hopefully final) echocardiogram on Friday. I say cautiously, though, because now we're in stress mode. Our visits thus far have been filled with constant focus on his monitors. How's his breathing? Why is his oxygen at 94%? Come on, we can get a couple percentage points! Imagine our worry when we put him back down and his oxygen dropped to 85%. Upon unwrapping him and discovering that Sam had twisted his ankle basically under his body, we adjusted him and he was back into the 97-97% range. But the beeping - it doesn't just mean the monitor is reading something funny. Now, it's proof (in our own screwed up heads) that he's relapsing back into the pulmonary hypertension.
It's a twisted game. But one that I hope only exists for two more days. Because if we can stay at 33-35% today (or better), and then get a good news echocardiogram, we can start to wean the oxygen. We can start actually considering the possibility that home is closer than farther. But that's to come on Friday and Saturday. For today isn't a milestone day. It's a wait for the next milestone day day. And those....those are some of the hardest ones.
Before I go, I'm struck again at the magnitude of Sam's struggles and how they have a radius far greater than the St. Mark's NICU. We got a call this morning from Luke's teacher because we hadn't yet scheduled his Student/Parent conference meeting. In that call, Elisa was informed that Lukas gives his teacher medical updates each day on how Sam is doing. When we came home from our 11:00am feeding, my Mom dropped Miles off and told us that Miles had a meltdown because the picture of Sam (that he keeps in his preschool bag) was missing and he couldn't go without it. She had to print a picture off of the internet and put it in his bag to comfort him. If you want to see unconditional love, watch two brothers that have literally spent 15 minutes with their youngest sibling. They're in love They're lost. They're coping too. I guess we all are.
So today, on a non-milestone day, we will listen for beeping monitors. We'll watch Sam's chest to see how many times it rises and falls. And we'll cope. In any/every way we know how.
Brad
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