Wednesday, January 16, 2008


I am sending out an urgent prayer request little Paige. Paige has been in the hospital with one complication after another since her heart surgery in September! She was transfered to a hospital several hours further away from home in order to get the care she needed. It's been a terrible strain on her family. I have asked for prayers for her in the past and now I ask that you spread the word about Paige as she is in desperate need of prayers right now. As I have mentioned in past posts, I met Jenn in KS a few years ago when we attended a CHD quilt show. Jenn is one of the sweetest people I've ever met.

Her mom writes:
To day is a bad bad bad day, she is unresponsive and sleepy...
Her heart rate and sats are good but the PLE is taking a toll on her body and they can't control it.. Please pray, chant, dance or do whatever it is you do... We need them... I have called all family to be here.

Things sound really bad - just when it seemed that Paige was making some improvements. Here are the photos that I have of Paige and her family - they were at an uncle's wedding shortly before her surgery in September of 2007.

Jenn was recently able to set up a carepage so she could update everyone on Paige's progress. To go there and offer support, go to Carepage home sign in or register (it's free), click on "visit" and then type in PaigeMarieBennett (no spaces). Please leave messages of support for them. They have been through so much and it breaks my heart to think of what may happen in the next 24 hours or so.

Thank you.

UPDATE 1/20/08
Paige is improving slightly every day. She is still a very, very sick little girl but she is making some progress. Jenn, Paige's mom, gives daily updates at the carepages website. The information on how to get there is above. Please go there and offer your support.

Thanks again!

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!

Saturday, January 05, 2008

"You're Wiser Than You Think"

My Mom emailed this video to me and I just had to share it here. It is short but worth every second of it! Enjoy:

Here is more information about the video:

(A Production) Little did I know when I was given the audio to this phone call that it would become SO HUGE. When I produced this video, I knew it was special to ME, but never would I have guessed when typing the text and editing the music that it would literally touch MILLIONS. I am proud to have put this video together for the world to see and hear. We have had a lot of requests to replay the phone call that Pastor Mike shared during our church service on Sunday, Nov. 11th, 2007.

Here you'll find the video clip that I created just for you. After our church service I placed the video on YouTube so that you can watch it and share with family and friends.

Logan is a 13 year-old boy who lives on a ranch in a very small town in Nebraska. Logan listens to Christian Radio station 89.3FM KSBJ which broadcasts from Houston, TX. Logan called the radio station distraught because he had to take down a calf . His words have wisdom beyond his years.

Since airing the audio of the phone call and now the making of the video clip, it has taken on a life of its own. People are forwarding it all over the world. We encourage you to share the love of Christ with anyone you can.

(**Sky Angel is a family safe broadcasting service that is offered on satellite. KSBJ is a local Houston Christian music radio station. Video clip produced with love by me, Hear the entire message at