Friday, September 21, 2007

My Bad...

I am such a bad blogger... I haven't updated in awhile and I just realized that I haven't posted about our plans for Miss Jess. I sent an email to my heart support groups but forgot to post it here. ooops! So sorry! So here is the update that I sent and as usual, thank you all for your loving support.

As you all know, Jessica is having around 10,000 PVCs (premature ventricular contractions) a day and they are NOT benign... meaning they are life threatening. For 3 weeks now she has worn different heart monitors for the doctors to study and try to see if there is anything that they can do to help her. After 3 pediatric cardiologists (two of them electrophysiologists) putting their heads together and my husband and myself discussing it, we are admitting Jessica to the hospital on Sep 25th to try a drug that could help regulate the arrhythmias. Jessica will have to be in the peds ICU unit so they can monitor her heart-rate and watch for any side effects. I asked the peds cardiologist exactly which medication they would start Jess on so that I could research it online. I want to be as prepared as possible. The drug is PROCAINAMIDE. I have been doing some research about that particular drug online and some of the side effects can be pretty bad.... that's why they are going to have Jess in the PICU for a few days. I was told from the very beginning that there is a posibility that the medication could cause worse arrhythmias but the chances are low and if the drug works, then it could bring some relief to Jess. Do any of you experts out there have any experience with this particular drug?

The bad thing about all this is that Jessica's heart disease is progressing and she will at some point, have ventricular tachycardia... which will probably take her life. The medication we are going to try should resolve the PVCs and make Jess more comfortable but all studies show that it won't prevent the ventricular tachycardia. Karl and I are having a very hard time dealing with that information. We've known for many years that her heart defects will shorten her life and she has actually outlived anyone's expectations by a long shot.... but it's still heart breaking to see her slowly deteriorate over the years and now to know that our time is most likely short. She suffers a lot of pain every day and the arrhythmias are getting worse very quickly and are not only uncomfortable for her but they scare her so much. She is 19 years old but due to strokes and chronic lack of oxygen, she is at the level of a 6 - 7 yr old. She's my sweet little girl.

We are trying to fit in a lot of fun activities before the big hospital stay.... so Jessica, Susan (a volunteer from our Tu Nidito group) and Iwent to the theater to see Harry Potter. Our friends who own the horses came over yesterday. Unfortunately we didn't have any men around to help hoist Jessica up onto one of the horses so she didn't get to ride, but she did get to feed apples to them. I'm taking Jess for a tour of the PICU today so she can feel more comfortable being admitted there. I think that the hardest part for Jess will be: being confined to her bed for 3 days. (Hopefully she won't get sick from the meds!) I'm going to be looking out for coloring books, beads, etc... things that she can do while in bed and hooked up to the monitors. I'm trying to figure out what to take for ME to do (if Jess allows me to avert my attention away from her for a moment). I'm going to take some scrapbooking to do. I'm hoping to get pictures of Jessica riding the horse printed up so she can show them to the nurses and any visitors she might have.

I would very much appreciate any prayers and good thoughts. Hopefully the medication will do a good job and we will be home and PVC-free in just a few days. That's only a few days away and I have SO MUCH I need to do before then. Fortunately Karl has Tues-Sun off next week so he can either be at the hospital or home with the boys, getting them off to school, be there when they get home from school, etc.

Thank you all for your support and prayers.

ps: yesterday was my birthday - it's amazing to me how my children are getting older yet I remain the same age! Which is........ 29!


Rene said...

Happy Birthday! Are you sure you're only 29? Gosh, I wouldn't have put you past 28! Hope it was a great day! Lots of love and prayers going out to you and your family.

chelle said...

Happy Birthday!

Many hugs and sending positive vibes to you and your family!

Ruth said...

Happy Birthday Nancy!! I hope you had a good day.

I pray the new med will be a great help.

Mama Bear June said...


I'm so sorry, and I know words just aren't sufficient. I will be praying for all of you. Just wish I were closer, so I could come and spend time with you. May every moment you have with Jess be sweet. Being prepared for the inevitable sure doesn't make it any easier. I'll email you my cell phone number so you can call me ANY time you need to talk.

Belated happy birthday!

Anonymous said...

Hi Nancy, I just popped in today and read the message - it's the 25th and you are in my prayers. I hope things go well and I pray for comfort and strength for all of you. I wish I was closer so I could help in some way. Sending hugs and happy belated birthday.