Jessica's most recent holter monitor showed slightly less PVCs but not a significant difference. *huge sigh* But I didn't really expect it to be any different.
We decided not to try the beta blockers for the PVCs since we cannot risk Jessica's asthma acting up. It would be bad enough for her to be coughing and having trouble breathing but we just can't risk the asthma causing the lung bleeds again.
I asked about other medications and we discussed our options. We may try to put her a medication to get rid of the PVCs (Mexiletine - thank you Chris Molnar for that info!) but it has the possible side effect of causing more arrhythmia problems - Dr. D. has emailed two of the other peds cardiologists (who are electrophysiologist
We decided not to implant an ICD (defibrulator) since it has too many risks for Jess and all her bleeding and blood clotting problems. Dr. D had talked to both of the electrophysiologist
Jessica's heart disease is obviously progressing and we are on a downhill slope. We have no idea how quickly she will continue to deteriorate or she could plateau once again.
It is scary knowing that she is having arrhythmia more than she is having sinus rhythm. It's also scary knowing that at any point she could have ventricular tachycardia that could be fatal and at the very least could make her pretty sick. She could also pass out and get hurt.
Yesterday as I was getting ready to have my shower Jess came and told me that her heart was beating hard. I told her to go and rest and I would come and check on her after my shower. A couple of minutes later I thought I heard her crying. I suddenly wondered if she could be having a tachycardia episode so I hurried and checked on her. She wasn't crying but was uncomfortable. The wind was blowing and my tv was on in my bedroom and I think the two combined must have been what sounded like her crying. At least she was ok.... this time.
As they say..... ignorance is bliss. Two weeks ago I didn't have any idea what was going on.... now I can't stop thinking about it - not even when I sleep.