Sunday, September 02, 2007

Holter monitor #2 results

Oh, where to begin? .... I think I'm on information overload.

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 electrophysiologists) to find out their thoughts. If he doesn't hear from them over the holiday weekend then he will talk to them on Tuesday. They will most likely want to start the meds in the hospital so if she has any problems then they are right there to monitor it. These new meds will not prevent tachycardia but could help Jess be more comfortable by getting rid of the PVCs. The only thing to do for the tachycardia is to implant a defibrulator. Many studies have shown that the meds don't prevent the life-threatening tachycardia and that's why they invented the defibrulators that they can implant.

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 electrophysiologists last week about it and everyone agrees that it's not a good idea for Jessica. As I posted before, the ICD would have a lead in her ventricle and it could cause a blood clot to form and with Jessica's large VSD still open, the blood clot could go directly to her brain if it were to break off. Jess has already had 2 devistating strokes. To counteract the blood clots from even forming, they would have to put her on a blood thinner but we can't do that due to the past lung bleeds.

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.
My new mantra is: "Just keep swimmin"....
or more like: "Just keep praying... just keep praying."
Thank you again for all the wonderful emails, messages and your thoughts and prayers.


~Jennifer said...

Just keep swimmin and just keep praying are good mantras. I will remember that because I like that little Dori fish saying, "just keep swimming, just keep swimming."

I'm praying for Jess and all of you.

Just keep swimmin'!


Ann(ie) said...

Your posts really make me realize how often I sweat the small stuff.

Thinking of you and your family daily.

Much love and prayers....keep swimmin....xo.

chelle said...

HUGS HUGS HUGS For you and all your family!!!! I hope all goes well :) Sending positive vibes!

Ruth said...

Oh, Nance. I'm praying. Please know I'm praying. {{HUGS}}