I remember about two years ago, this very week, one of our awesome NICU nurses told us to not watch the numbers, but watch Kendall. Ben and I would sit there in her little curtained off area and just focus on that monitor, like we were at the horse races or something. Numbers MEANT something – they meant she was breathing too fast or not enough, having a good day or a bad day, getting closer to home or stretching endlessly out in front of us.
And while i know so much more about what the numbers mean – I am still here, two years later, watching numbers.
There are number windows open up on my laptop screen – convert Celsius to Fahrenheit, calculate anion gap, what should these numbers be, and what do those numbers have to do with other numbers.
Right now, in the quietest hours of the morning, of really any day in any hospital, i am sitting and watching the numbers on her monitor. Her monitor has lots of pretty colors and squiggly lines, and when the lines are symmetrically squiggly, they are telling us the right numbers. The top line is green – that is her HR (heart rate). This is what brought us here. When Kendall is feeling well/doing well, her sleeping HR is in the 90’s – 110 range. Last nite, her sleeping HR was 190 at the height of her fever spike (if she moved/coughed/cried at all, it would skyrocket up near 230). Have you ever had a really good cardio workout that left you feeling like your heart was just pumping a mile a minute? Now try sleeping with your heart like that. Not super restful. Tonite her green (HR) number is 142 asleep. It has gone as low as 110 tonite – but that makes the other numbers not real happy. Still, it is a definite improvement.
Her next number is blue – this is another number we watch a lot at home, even though she tends to do very well with this one – her oximetry (amount of oxygen in her blood) number, also referred to as her “sat” (for oxygen “saturation”, how well is oxygen being dispersed throughout her body, or, how well are her lungs doing their job). Earlier this morning, we tried an oxygen wean – where we see if Kendall will keep her numbers looking good on her own, without the extra oxygen. Within about two hours, it was obvious that she could not. Her pulse ox number was 90. For a kid who typically doesn’t dip below 97 even at nite, I knew this was not a good sign. She was asleep when she was doing it though, so I was going to stop watching the numbers and watch HER, to see how she was handling being that low on o2, when all of a sudden she stiffened, arched rigidly, screamed, and alarms started going off loudly all over the place. I heard a nurse come running down the hall (they can see/hear all the alarms on our unit from every nurse’s station), and I glanced quickly at the numbers – HR was 214, sat was 74. I knew it wasn’t a seizure because of how quick the whole episode was, but it sure was scary to watch. kendall essentially “passed out” – not fully, but she went RIGHT to sleep and slept through a lot of activity the next half hour or so- afterwards. But it sure had me glued to the monitors for a while after that! Dr. A’s theory is that it was a mucus plug – as they can be quite painful, and we have seen her have similar smaller episodes since that time. Tonite as we were getting her ready for “bed” (vs just the laying around and drifiting in and out of sleep all day that she has been doing!), we had her oxygen off of her again for about twenty minutes. Of that, she was mostly “asleep” and not being moved for about the last 10. In that ten minutes i watched her ever so slowly creep down from 97 (on the o2) to 85, and then she decided to just hang out there. Not good. So, we quickly got her cranked back up. For those who care, she is on 1L (one liter) of flow.
And even at that, she is struggling to stay around 95%. For a kid who RARELY sees those numbers, I know she is fighting something hard. I am sure it is just this virus. It is just sad to watch her little body struggle so hard to fight a cold, I cannot even imagine if it were anything more sinister than that right now.
And that’s all I wanted to say about that tonite.
thank you so much for the prayers, the thoughts, the offers of help/meals. Maybe if I get a little more sleep tonite I will be able to formulate a plan of some kind, and be able to take you up on some of those offers.