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.
I'm petrified.
A truly moving post. I cannot even begin to understand the fear you must face everyday. Yours is certainly a difficult journey. Sending you hugs and support.
ReplyDeleteIt is never easy for us heart mommies to get any sleep at night. I am sure for you it is extra difficult worrying over what is troubling the DQ. It is so hard to know what is bothering them. Saying lots of prayers for you dear friend!
ReplyDeleteMy husband is of the same mindset...if he doesn't think about it, it isn't a problem. There are so many times I wish I could be like that. I haven't slept through the night in 2 years. I don't have a monitor...Hope sleeps at the end of my bed in her crib. I check on her at least 3 times every night. If she moves it will wake me up. If she cries I am right there. I think I drive myself crazy sometimes.
ReplyDeleteI will continue praying that her heart is not the problem...let's go with the ears again.
I'm keeping you in my thoughts and prayers.
ReplyDeleteAnd at the risk of this sounding unkind - and I'm so sorry if it does - you need to cal the cardiologist. They need to know your fears. You're the only one who can ever see all that she's going through - they need your input to treat her well.
I'm hoping that all goes well for you. This is such a difficult thing to deal with.
KLZ,
ReplyDeleteI appreciate your comment and it does not sound unkind at all. Unfortunately, my daughter's cardiologist does know my fears and knows what the Dancing Queen is going through right now. I talk with her (the card) regularly, including last week when we started to see problems again. The answer is always the same: "Your daughter is doing as well as she can. There is nothing more that can be done for her heart. We will hope the pulmonologist can help with her shortness of breath and easy tiring, but her weakness is her lungs." When she told me that last Friday, I told her "but the pulmonologist always blames it on the heart." We both laughed because that is the crux of the problem and there is nothing more to be done (except grow her pulmonary arteries and that hasn't happened yet). All of her doctors know this. And I know it, now. I spent all of 2010 searching for smarter doctors and flew across the country to get better answers. Every single doc said the same thing. We went for the last ditch effort and it worked, my daughter is doing much better now, but there is nothing more they can do and we have to live with the poor heart function, the high pulmonary pressures, and the fast heart rate. Because of this, the docs don't know how long DQ's heart will last. She could be here until adulthood, but she could be gone tomorrow. The Dancing Queen's surgical hospital actually is doing research into trying to find out how frequent people with her defects as repaired have sudden cardiac arrest that causes death and why. They haven't found any answers yet. It all remains a mystery (and they said so in a paper published last year). Some kids do very well after repair. Some don't. Hence my fear.
(((Hugs))).
ReplyDeleteDoes it ever feel like as a Mom, you carry the burden of the worries?
ReplyDeleteThinking of you as always, and hoping it's just the ears. Love to DQ from our household.