Heart Healthy

After a long week with little sleep, I am happy to report Piper's heart is in good shape. It seems her autonomic nervous system sends her body into hibernation during sleep when she is ill and causes her heart rate to drop to a dangerous point.

This week, I stayed up watching the monitors each night not sure what I would do if she didn't wake up. Her cardiologist feels 44 bpm is okay for Piper when she is ill. However, this is not what he told me 1 1/2 yrs ago. I am now supposed to wake her in the middle of the night if she is pale and heart rate is in 30's. Granted, 30-40 bpm are considered cardiac arrest levels and her normal resting heart rate is around 100 bpm. I am having a hard time believing that this is okay. Especially when I am sleep deprived, scared in the middle of the night, and making the call by myself.

So, I am pressing onward to find more information to help me rest easier. I can't stay up everytime she is ill - she is ill every other week. My body can't possibly handle the lack of sleep and I will be a cranky mommy.

I do respect her cardiologist. I trust his opinion that it is her autonomic nervous system but I need more information since I am the one doing the work to keep my daughter healthy and alive during her illnesses.

I am adding a link to a video about the autonomic nervous system to explain what is involved (http://forums.studentdoctor.net/blog.php?b=3769). I will find a child neurologist to help me with Piper's problem. I believe that her system may not be functioning correctly due to her premature birth and that is why she has so many problems. Perhaps a neurologist can help her rather than expect me to stay up and make sure my daughter's heart is still beating. It's crazy what the cardiologist is expecting of me. (Update: I spoke too soon. Piper's pediatrician said if Piper's heart rate continues to drop this low over a period of time, then she could possibly need a pacemaker! Her cardiologist had also said if this continues repeatedly then he would be more concerned. Praying this is not the answer.)

I will find the answers....that's what mom's do ;o)

Peace and Bunny Ears,
Aimee