Sunday, August 26, 2007

Jessica's heart monitor results

I talked to the PC on Friday regarding the holter monitor results and they are not good. Dr. D is very concerned. He said that the last holter test done in 2004 showed 147 PVC's in 24 hour period. This time she had over 10,000 in 24 hours. That's a significant (HUGE!!!) difference. The PVC's are caused by her right ventricle getting more and more enlarged. The doctor said "her heart disease is progressing." He hummed and hawed for awhile and I knew what point he was avoiding... he finally came out and said, "I've known you for a long time and so I might as well say it... (and after more beating around the bush he said) it can be fatal." He said that normally he would treat the PVC's with a beta blocker, propanalol, but that can aggravate her asthma. (that's the exact same thing the pulmonary doctor told us on Monday). If Jessica's asthma acts up, the coughing can cause the lung bleeds to start up again. That has got to be the scariest and most horrible thing we have ever faced.... so far.

He said that he will talk to one of two other PC's who specialize in the electrical workings of the heart and see if they have any other ideas. One of those doctors is one that we've known for many years (he was a resident at the hospital when Jessica was a baby. He left and did the rest of his schooling, etc, and came back a few years ago as a PC. He remembers Jessica well and said that they used to call her a "frequent flyer". lol) Dr. D will be out of town doing clinics until Wed afternoon and that's when he will be able to talk to the other doctors.
Dr. D asked if Jess was on any type of stimulant and no, she isn't. I read him the list of meds she was on and then mentioned that the pulmonary doctor had taken Jessica off caffeine. He didn't know if that would cause Jess to have more PVC's but we decided to do another holter monitor this coming week to see for sure if that had anything to do with the increase in PVC's. Dr D also mentioned that another possibility is to do a pacemaker with defibrillator but of course that would require surgery. I really don't know a whole lot about that and I know that type of surgery is very minor compared to what Jessica has been through... but it will take a lot of thought, research and prayer to decide whether to do it or not. Jessica has repeatedly asked to never have another surgery. She is terminal - there is nothing more than can be done to fix her heart and she isn't a candidate for transplant.
I worry about talking to her about it because she has so much anxiety as it is. She can't fully understand what is going on with her heart so she isn't capable of making that type of decision. She does know that her heart is getting worse. She tells people, "every year my heart gets sicker". She is all too aware that she can't do things that she used to be able to do and when she was having the lung bleeds she knew she could die from them. She would be crying until about 4am saying that she doesn't want to die. She has always had separation anxiety but it's been heightened 100xs by going through that.

Jessica has not been complaining of the PVC's nearly as much since she did the holter test. Either the little bit of caffeine was causing a lot of PVC's or she is more calm because she knows she is being taken care of. She has not even asked me what the monitor said. She is comforted knowing that we did it and that Dr. D is taking care of her.

My heart is heavy trying to cope with this news. Jessica has had heart monitors before and they have always come back ok. I was not prepared for this news. Dr. D is concerned about the sudden increase in the amount of PVC's. We saw him just over a month ago and she was doing well. Dr. D is retiring soon and we are to see a different PC starting in December. I chose Dr. K since he was the one who did Jessica's cath a few years ago and did an excellent job. He listened to Jessica and to us. We have known him for several years and I feel confident that he will do everything possible to help Jessica be as comfortable as possible.

Please keep Jessica, Karl and I in your prayers. We may have some tough choices ahead of us and we need God's guidance. We appreciate your kind words and love so very much.

I forgot to mention that other possible side effects of the beta blockers are deep depression and fatigue. Miss Jess already battles both of these.

7 comments:

chelle said...

awww ... I am so sorry the news was not good. Hugs!

Awesome Mom said...

I am sending a big cyber hug to you! I really wish that there were easier answers for you and Jessica. If the defibrillator insertion is anything like a pacemaker they will likely have to crack her chest a little to put the leads in but after that the care is very simple.

~Jennifer said...

I'm sorry to hear this, and my heart is also heavy, knowing that there can be nothing worse to endure as a mom than not being able to fix whatever is wrong with our children. I will be lifting your family up in my prayers.

The Special Zipper said...

Nancy
Sorry I have not been past for a while with a bit happening for us .. pretty much mostly happy stuff.
Your family will definitely be in my prayers .. how disappointing to return to your blog to this awful news.
Thoughts and prayers with you all.

Mama Bear June said...

I'm so sorry, Nancy. I know quite well how easy it is to become "relaxed" for a bit and then having something know you over the head as a reminder that your child is so seriously ill. Will be praying the Lord gives you a clear sign on any decisions you need to make.

Hugs to all of you and especially to your Miss Jess.

Mary Fran said...

Nancy,
That sucks! You will be in my thoughts and prayers. As you know God is good all the time. I pray that you will feel his comfort and peace during this difficult time. Love you!

Terri@SteelMagnolia said...

I think about you every day....