Saturday, January 12, 2008

Update on Miss Jess - NOT what I wanted to hear

*warning* may contain rambling and random changing of subjects.

Jessica recently had a holter (heart) monitor to see if the Procainamide was helping cut back on how many PVCs (premature ventricular contractions) she is having. If you will remember, back in August Jessica wore a holter monitor and I posted this: the last holter test done in 2004 showed 147 PVC's in 24 hour period. This time (August of 07) 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.

After a couple more heart monitors we admitted Jess into the hospital to try a heart medication that could help prevent the PVCs. I posted several posts on this blog about that 5-day stay in the PICU. If you want to read them, click on "Jessica" in the Label cloud and scroll down until you find them. Those posts would be on Sep 25 - Sep 30. Previous to that are posts that lead up to me realizing that something was terribly wrong.

So... that brings us up to the most recent holter monitor which we did just over a week ago. The Pediatric Cardiologist called me this afternoon and told me that on that monitor she had 9,000 PVCs!!! He also told me that in September she had 9 episodes where she had two PVCs right in a row (couplets). This time she had 300 couplets! WHAT IN THE WORLD??? Obviously this medication is not helping. We discusses the possibilities of what could be going on. It seems that she doesn't have many PVCs while she is sleeping and then when she is awake and doing stuff her heart is going crazy. I suggested sedating her 24/7 but he didn't go for that. LOL *sigh* I told him that a couple of days ago Jess had a giggling attack watching our silly cat and I could see her turning more and more blue. I took her to her room and slapped on the pulse-ox just for kicks and it was 49%. After about 5 - 7 minutes the pulse-ox was up to 70% so I let her take it off. Dr. D wondered if her being so blue was causing the PVCs but now that I think of it she didn't seem to have any PVCs during that few minutes that she was so blue.... but that was only 5 minutes of 24 hours so it doesn't really mean much.

We also talked about how Jessica is feeling. She seems to be having fewer episodes where her heart hurts or it "feels like it's going to jump out of her chest" but she still does have some of those times. She also told me two nights ago that sometimes it feels like her heart is going to explode out of her chest. I didn't realize that it hurt that much! Dr. D and I think that she possibly could be experiencing a placebo effect where since she is taking medication to make her heart feel better, she doesn't feel them as much because she truly believes it is working. Obviously I'm not going to be telling her that the medication isn't working - at least not right now.

Dr. D is going to talk with the electrophysiologist on Monday and see what he has to say. They may want to admit Jess to the PICU again and try a different medication or maybe even give her a placebo. Those are pretty much our only options. The electrophysiologist may say that since once medication in this category didn't help at all, we may not want to risk any other meds in this class since some of the side effects can be severe - and even fatal. Soooo..... we are pretty much at the dead end..... there may be a rocky path beyond that dead end but all evidence shows that her heart disease is progressing and quite rapidly! Jessica has been having more generalized pain and is requiring more morphine, she tires extremely easily and she gets very blue very easily. I just have one question: HOW DID WE GET HERE? No matter how long I try to prepare for this I just can't believe it is happening. I have no idea how much time we have but the couplets lead into tachycardia which can be fatal. If she survives tachycardia episodes, I understand that they are very uncomfortable and even cause patients to pass out. Part of me keeps thinking of all the times she came close to death and then survived... she even survived all those lung bleed - and she even beat hospice! So the natural feeling is to believe that she will ALWAYS pull through and be OK. But we knew there would come a time when she would deteriorate and I have known that it's happening. She didn't have much energy to go to school last year - only about 4 times the whole school year - and I've taken her once so far this year. I took her to her class party right before Christmas (excuse me) winter break. Who knows... we may need hospice again sometime soon.

Don't get me wrong, her life isn't total doom and gloom, she enjoys life more than anyone I know! She loves people and spending time with them. Lately (the last couple of years actually) she has either chosen not to go to a cousin's birthday party or other big gathering or once we are there, she "hurts all over" and the noise really bothers her so she asks to go home right away.
She enjoyed having a lot of family come to our house on Christmas Eve. I think she was running on adrenalin! LOL We had a great time and a couple of times she went into her bedroom to rest and then came back out to visit. I plan on posting Thanksgiving, Christmas and other photos soon.

I know that my daughter has been loaned to me by a loving Heavenly Father who has sustained us through many difficult trials and He will continue to sustain us. Jess came so near death during her 2nd heart surgery (she was 3 yrs old) and then again 4 days afterwards that Karl and I have felt like we have been living on borrowed time since then... but no matter how much time we have we'll always want one more day, one more hug, one more
giggle and one more smile.... and even one more phone call when Daddy and I are out on a date. lol

I had better get to bed and try that new invention people keep talking about... I think they call it sleep. At least by now I'm so tired that I may be able to actually sleep and not lay there crying..... you see, Karl has been in Phoenix all week and won't be home until much later this afternoon - yes, it is Saturday now. *gasp!* I didn't tell him the results of the monitor yet since he has a meeting this morning and then has to drive home. I didn't want him to have to go through a meeting and then drive home while trying to deal with this new, devastating news.

Anyhow... I appreciate any uplifting comments or hugs. I appreciate you all!


Awesome Mom said...

You and your family will be in my prayers. Hang in there!

Mary Fran said...

Oh boy Nancy! I was hoping that no news was good news. Jess is quite the warrior and I am praying that she will conquer yet another battle. Love you! You know where to find me.

Ruth said...

Oh, Nancy. I'm so sorry to hear your news. I will be praying for you all. And Mary Fran is right...Jess is quite the warrior. {{{HUGS!!}}}

Jennifer said...

I have no words.

I just want you to know I'm thinking of and praying for you.

Mama Bear June said...

Nancy, I'm sending lots of hugs and prayers. I'm so sorry I haven't checked your blog for a few days. We had a crazy week last week and it lasted into the weekend. (There are photos of adorable kitties on my blog if that would give you a little smile now and then.)

I do know exactly the rollercoaster of emotions you are riding right now. We've had a few times where we grew a little complacent, then had a scare where we thought we would lose Kendall. I know it's a process, but I don't think any of us will ever be totally READY to let our child go back to God. But I also know that we have a perspective that not everyone gets. We know exactly how precious every moment is with our loved ones, with which the Lord blesses us.

May the Lord give you His peace that passes understanding and His sweet rest. Keep leaning on the Everlasting Arms.

Jode and Jenny said...

Hey, Nancy,
I read this entry a while back, but did want to let you know we are praying for all of you there. Hang in there, and thanks for the update.

Anonymous said...

Hi Nancy, I am sorry that it has been so long since I have checked in. With the new little one, my time has been stretched. All of you are in my prayers and our hearts go out to you and your family. I wish there was something we could do - or that I could at least be there to give you a real hug. Just know that you are all constantly in my prayers.

Mindi said...

Hi Nancy and Jess - I'm usually a lurker and I'm not a very reglar blog reader, but I just read this and want to give Jess a big cyber hug. ((HUG)) I get PVCs also, although not nearly as many as Jess and I have to agree with her, they can be very uncomfortable. The more excited or stressed I am, the worse they are too. Not fun.

I have no words of widsom unfortunately, I wish I could say something like, oh, don't worry, she'll be fine, but I've read your blog from start to finish, and obviously that's not the case. It's times like this when we just have to put all our faith in our Heavenly Father and try to remember that this lifetime is just a short, short time when compared with eternity and once Jess leaves this life it will only be a short time until you're united again forever. That's not much consolation now though, I'm sorry.

As for Miss Jess and her meds, there's nothing wrong with placebos if they make her feel better - that's the #1 priority, right? Hugs to you too for all the mom stuff you do with such a willing heart, and lots of prayers to the family. Would you mind if I put your name on the prayer roll at the WQ temple?