I'm sitting here, staring at the baby monitor. I feel like I do that constantly these days. The Dancing Queen is not sleeping well. AGAIN. This has been two weeks now. She is tossing and turning and making lots of noises, obviously not comfortable or in her normal sleep patterns. She has been crying out uncontrollably at least twice a night as well for the last two weeks. There is no self-soothing. Either the Mad Scientist or I must go to her.
I am petrified.
The Dancing Queen only "sleeps" like this when something is wrong--when she is in pain. I think it is her ears. After all, it was a little over two weeks ago when she finished the course of the big gun antibiotics. Two days later, this horrible sleep pattern started. Two days after that, she had the signs of another infection and was started on low-level antibiotics (well, low level for her, big guns for most people). I honestly think she still has an ear infection over 12 days into this 14 day course of augmentin.
Part of me really hopes that is what is going on. At least we are working on that problem. The Dancing Queen will have her current ear tubes removed in a week and a half and we are working with her immunologist on finding another way to fight bacterial infections. Those are promising solutions or at least something proactive.
What I am really scared about though is that an ear infection is not the true problem. I've noticed that the last couple of mornings when I must rescue DQ, the first thing I hear when I enter the room is her heart beating so hard. I know that her heart beat is loud because of her mechanical valve, but it seems louder to me every morning. Are my ears playing tricks on me?
At the same time, DQ's heart rate, sleeping, has been about 130. That is fast, especially asleep. Although not terribly fast for DQ with her poor heart function and high pulmonary artery pressure, but scary nonetheless. Asleep, her heart rate should be at most 100, not 130. Granted, I don't know the last time we saw a sleeping heart rate of 100.
Then there are the other signs. She has been waking up swollen. That is DQ's tell that her heart is working too hard. Her tricuspid valve regurgitates, pushing blood up to her face. Once she gets her morning dose of lasix, she seems better, but it is one more thing for me to worry about. Are her pulmonary pressures rising again? Or is it that her ear infection isn't allowing her to properly rest, so her heart doesn't get the break it needs?
We were told only a couple of weeks ago that DQ's heart is the best it has ever been and there is nothing more to be done. Yet, her heart rate is so fast compared with what it should be. It is damaged (and healing still maybe). How long can a heart that has suffered so much damage already and is currently working so much extra last? I asked the Mad Scientist this tonight because it weighs on me a lot, especially with all of the other symptoms I see. His answer "I don't want to think about it and I won't." I wish I could have that mindset, but I don't. I know there is no answer and I know exactly what DQ's cardiologist would say (she doesn't know). Still.