There's No Place Like Home

I'm sorry that I didn't update sooner but it's been quite hectic, as you can imagine. We've had a lot of ups and downs but the good news is that WE ARE HOME!!!

We got home yesterday (Saturday) late afternoon. After a lot of rest, a proper bath and getting her hair washed, Jessica is feeling more like herself.... the same goes for me, too. It sure can wear a person out being in the PICU for 5 days.

The Procainamide is doing a pretty good job of preventing Jessica's PVCs. There are times that she has a run of PVCs that are uncomfortable but most of the time she is PVC-free! On Saturday morning she kept looking at the monitor and saying, "Look mom! Zero PVCs!" There have been times that her heart beat has gone into trigeminy (every third heartbeat is a PVC) but it's not nearly as often as it was when we first were admitted to the hospital. Back then she was in trigenimy at least as often as she was in sinus rhythm.

It has been a pain trying to find a pharmacy that carries Procainamide in town. We finally had to have the hospital pharmacy fill a 4-day supply until our pharmacy could get it in. Just when we thought we didn't have to worry about filling the prescription, our pharmacy called and told us that they can't even order it - apparently their supplier doesn't handle that particular medication. So... I had to call around and find another pharmacy who can order it. I finally found a pharmacy who says they can get it in by tomorrow but we'll see what happens when I call and see if the script has been filled. If all else fails, we could get the prescription through the hospital out-patient pharmacy - except that they don't accept our insurance! I had to pay cash for the 4-day supply of Procainamide. I just can't believe that it's been such a mess trying to get the medication. At first the out-patient pharmacy at the hospital tried telling me that they were out of the meds. I told them that my daughter has been in the PICU all week receiving that medication and that we had called all around town trying to find it and that NOBODY had it. There's no way we were going to keep her in the hospital all weekend just to find the medicine and we weren't just about to take her home without it and let her PVCs get up to 10,000 a day again. So.... the pharmacist went downstairs and talked to the in-patient pharmacist and finally got me a 4-day supply.

I was asking my mom a rhetorical question: "Why can't just one thing go smoothly for us? .... Oh yeah... then it wouldn't be us!" lol

Speaking of my mom, please keep her in your prayers. She just had her 2nd knee replacement surgery yesterday and so far she is doing well. I believe she is going home from the hospital tomorrow. I hope her recovery goes well. She is very determined, just like last time, to do her physical therapy and exercises to help her knee recover from the surgery as quickly as possible. Go Mom!

Also, one more prayer request: My blogger friend, Jenny, has a young daughter, Lindley, who is having open heart surgery on Oct 2nd. The family has to travel to another city for the surgery and of course it's going to be difficult on everyone involved.... including the 3 toddlers! The daughter who is undergoing the surgery is a toddler twin and has a younger brother. Jenny calls them the toddler trio. They are very cute - and BUSY! hehe... I love Jenny's humor and I also love her caring support. So please keep them all in your prayers this week. I hope that Jenny will be able to update her blog so that we will know how Lindley is doing.

I am guarded about Jessica's health right now. She has been very tired the last few days and this can be a side-effect from the Procainamide... but it could also be from not getting enough sleep at the hospital. You know how it goes... you get woken up all the time whether it's on purpose or not. One moron rode his floor cleaning machine into our room while Jess and I were taking a nap. Jessica's door was closed for a reason! gggrrr.... Then there's the monitors going off for no reason and the sounds from other patient's rooms, etc. I'm really hoping that's why Jess has been so tired the last couple of days. I'll have to keep an eye on it and just wait and see.

I do have to hand it to the nurses, techs and doctors who cared for us in the PICU. They were amazing and very kind. They actually listened to me and followed my lead as to when Jessica's meds were due, what her O2 sats are usually, and they even joked about hiring me on as a nurse since I am so knowledgeable about Jessica's medical stuff. Karl asked if they could give me an honorary degree and I said that I should get one in "JESSICA". LOL! One thing that surprised me was how low Jessica's oxygen gets when doing very little activity. Every time I helped Jess to the bathroom - which was less than 10 feet away from her bed, her pulse-ox would be below 60% (usually 55 - 58% and once even 54%) when I got her back into bed. It makes me wonder how low she is at home when she walks around the house and is gasping for air. We only do spot checks with the pulse-ox at home so I didn't know that she was dropping that low that often. Our doctors don't want us to be so concerned about the numbers on the monitors that we miss out on enjoying what we can with Jess. I completely agree with that and that's why I don't check the pulse-ox too often. But it is dis-heartening that her oxygen sats get so low so easily. Another sign that her heart disease is progressing. And Doctor Tammy, if you read this, I am still holding your responsible for us not leaving the hospital until Saturday AFTERNOON, eventhough it was the pharmacy's fault! LOL! (I'm just joking!) Dr. Tammy is a resident who cared for us and she said that she would take full responsibility if we didn't get out of the hospital quickly when Jessica asked her what time we could go home on Saturday. We would have left by 12:30 or 1:00 but as I mentioned earlier, we had to try to find the meds and that took some time. Jessica had me give her blog addy to Dr. Tammy and a couple of nurses. I told them that from Jessica's blog they could find a link to mine where I include a lot more details about Jess and even my review of their performance for all the world to see. Dr. Tammy joked about reading here about how it was her fault that we didn't get home earlier. So see? It's actually YOUR fault, Dr. Tammy, that I wrote it. neener-neener.

I truly appreciate all the messages of support. It's amazing how many of you wonderful people are pulling for us. And Mary, I LAUGH at your comment: "I have never met anyone as "together" as Nancy is. " I most definitely deny it! hehe! But hey... I appreciate the prayer request for Jess and myself on your blog. You are so sweet - and apparently easily fooled.

I started this post at 9:46pm and it's now 3:11am. No, I don't type that slow... I have had a bazillion interruptions. It's frustrating to try to write down my thoughts (what few I have) and then get interrupted and have to come back and get back on track. I think I shall head off to bed. I don't want to pass out from exhaustion and drool on my keyboard. ;-)

Better Day

First I want to thank all of you for the prayers and good thoughts. I know they are helping.

Karl did an awesome job taking care of Miss Jess while I was recouping at home. I just don't know what I would do without my wonderful husband. Jess had several crying episodes while I was at home but daddy did a great job with her.

I brought Brandon and Austin to the hospital with me after they got home from school and of course Jess was overjoyed to see me. One of the electrophysiologists had increased Jessica's procainamide up to 1GM and want to do a blood level Friday evening and said that she can't go home until at least Saturday morning. Of course Jessica was quite upset that she couldn't go home today (Thursday) but the good news is that she is having A LOT LESS PVCs on the increased dose of the procainimide. She seems to have some start up at about the time she is to take a dose and then within a couple of hours after taking the procainimide she is down to 0 (that is ZERO) PVCs most of the time.

It's almost 1:00am and I am trying to get Miss Jess settled in to go to sleep. Hopefully we will get to sleep soon and have a good night.

Thank you all again for your good thoughts and prayers.

Discouraged..... and sick

Well, I guess I spoke too soon. After Jessica's nap this morning she started having PVCs again. Not as many as yesterday but sometimes up to 28/minute and she went into trigeminy many times as well. The doctors came by and decided to increase the procainamide from 250mg to 500. At least this way she can take it as a pill. And true to form, her 2:00pm meds didn't get there until 6:00pm! ugh!

I have been sleep deprived even before going into the hospital and my body is rebelling. I hate that part of fibromyalgia. I can go on for awhile and then suddenly my body will just say NO MORE! I end up with a migraine along with the nausea and dizziness, etc. Karl went to the hospital so that I could come home and have a nap. It was very scary for me driving home as I realized I wasn't able to concentrate as well as I should. Fortunately I made it home and went to bed for a few hours. After waking up I still felt miserable so I called Karl and he offered to stay the night with Jess. I talked to Jessica and she cried, leaving me feeling quite emotional, but as I told her, I knew I was leaving her in good hand.... her daddy is a good guy and will do a good job taking care of her. I'm having the boys get ready for bed right now and then I'm headed to bed too.

Please pray that I will feel better so that I can go back to the hospital and help Jessica deal with everything going on. Please pray that the medication will work and that she will get some relief and come home soon. Pray that Karl will be able to help Jess tonight and that he will get some rest also. My sons are all doing ok but please pray that they continue to hang in there. I have a feeling that Jess will not be coming home tomorrow and I suspectshe will have a rough time dealing with it.

Thank you all so much!

Morning - Day 2

Jessica woke up bright and early this morning - 6:00am! Not so great considering we didn't get to sleep until 2:00am. Miss Jess had an emotional time when it was time to go to sleep so I climbed into bed with her as best as I could and helped calm her down. Poor kiddo just wants to feel better and go home.

Jess had blood drawn through her IV and then got her Procainamide. We are waiting for the breakfast trays and then hopefully we can have a nap. Hey, I can dream, can't I? (even if it is just daydreaming)

Yesterday Jessica would have up to 30 PVCs per minute and rarely a minute would go by with no PVCs. She would go into trigeminy (every third beat is a PVC) quite often and one time I saw that she had two PVCs in a row. She could have had more of the couplets but I didn't look at the alarm every time it went off since it was going off frequently. They had the alarm set to go off if she had more than 5 PVCs/minute. Fortunately the nurse turned the alams off during the night so that we could get some sleep. The nurse told me this morning that Jessica didn't go into trigenimy after she fell asleep at all! This is a good thing although she didn't seem to have PVCs while sleeping either time that she had the holter monitors on.

UPDATE 9:00AM:
We have eaten breakfast and the new nurse and attending doctors have been in to visit. So far Jessica has had NO PVCs!!!!!!! They said that usually these meds don't work this fast but apparently this one seems to be working for Miss Jess!!! I hate to get my hopes up but she is really doing well so far today. Of course when Karl and I talked to the electrophysiologist PC yesterday, we discussed the possibility of the meds causing more arrhythmias as well as sending her into v-tach. We discussed her DNR orders and they have it on the charts. The other doctors were told about the DNR orders and the PICU docs briefly discussed them with me last night. Everyone is so good to us here and they all understand that the DNR is Jessica's wish. She said several times that the tubes that are hanging on the PICU bed tower scared her. The nurse, doctor and I reassured her several times that those are in every PICU room and that they knew not to use them for her.

Jessica is munching on ice and using her new markers to draw pictures. (I bought her a set of 50 markers that are in a little tower container for her hospital stay). I'm about to fall asleep so maybe I can grab a few zzzzzzzz's while she watches TV and draws.

Thank you all for your thoughts and prayers. I feel so lost without my email addresses! Again, if you belong to a heart support group that I am unable to update, please pass this message along.

We have arrived

Our adventure has begun. We were supposed to be here at noon to meet the doctors and we were on time... but the doctors weren't. The nurses were expecting us and we got admitted and settled, but still no PC. Apparently there was another patient admission (I'm guessing it was an emergency-type thing) so we sat back and waited.

Jess barely got her first dose of the meds at 7:30pm so we are just getting started. Many of you know as well as I do how things can go... the doc takes forever to come to the PICU, then finally orders are placed... then the doc changes his mind about the dosage... then it takes pharmacy forever to send the meds up. So far the one dose of Procainamide hasn't done anything... either good or bad... so we just have to keep giving it to her until it gets up to a "therapeutic" level... and hopefully it will do her some good. She is having many PVCs - but there's no surprise there... that's what we're here for.

So far - so good. Jess has had a few moments of being sad to be here but she was a champ for the IV stick! She's already had a few visitors and a couple of gifts. Ahhhh...... the perks of hospital living.

It's almost 11:30pm and I am starting to get Jess ready for bed. Hopefully we'll be able to sleep - even if she does have to take the Procainamide at 2:00am.

Thank you all for your prayers and messages! I was a dufus and downloaded email before I left home but didn't get a chance to read many of them... I also don't have my email addresses here so I'm sorry that I can't email you all. If you belong to a heart support group that doesn't get updated, please pass my updates along.

Thanks again!
Nancy

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!

ARRR... Today Be Talk Like A Pirate Day!

AHOY Matey! Today be "International Talk Like A Pirate Day!!!" Enjoy yer day a'talkin like a pirate, ARRRRR!!!

Today also be my sister, Karen's birthday! Stop by her blog, I Made It Through Another Day! and give her a big birthday wish! I won't be tellin' her age but I will say it is the big 4-OH!!!

Happy Birthday SIS!

*sorry Karen, it just slipped out!* arrrrrrrr

Music

After a hiatus from doing the weekly Photo Hunters, I am back! My computer's hard drive crashed and I lost some information. We bought a new hard drive and I had to find my photos (which I had backed-up. yay!) and reinstall my favorite photo organizing program (Creative Memories - Memory Manager) and then realized that all the sorting was gone because I hadn't backed it up right. ugh! Then... my daughter started having problems with arrhythmias, etc... but I've decided that I need to do the photo hunters meme because I LOVE IT! So without further adieu, here's my music photos:


Austin and Brandon really liked Grandpa's musical dancing Santa


Austin in orchestra last year (5th grade)


Here is my nephew, Marcus, with his marching band. Marcus plays the baritone. He loves the marching band and what is so amazing is that he is doing it even while battling a cancerous brain tumor. Way to go, Marcus!


Jessica and her date, Phil, went to a special prom for teens who are dealing with serious medical problems. Jessica is in the tiara and cream blouse sitting at the table. Phil is sitting to her left and we know other the girls at the table from our Tu Nidito support group.


Some of the teens dancing at the prom.

Jessica didn't like the music to be so loud so she and Phil went into the room where photos were being taken to talk and enjoy the prom.

Just in case it isn't obvious to everyone... there is music at the prom... hence the prom pictures. hehe

FRIENDSHIP FRIDAY

I'm trying Mr. Linky for the first time. Mr Linky is used for memes and other blogging events where people (besides me) want to participate and can easily leave their information including their name and blog link so that you can go and read theirs too.

This first Mr Linky meme is Friendship Friday. I'm not sure where or when Friendship Friday started but I think it's a great idea. One can never have too many friends! I may come off sounding like someone who has just won an Oscar and people are motioning to me, trying to get me to shuddup and sit down already. The music may begin to play and someone may start to pull my arm trying to drag me off stage, but there are really so many people that deserve mentioning. I promise my next Oscar acceptance speech Friendship Friday won't be quite so long.

I'm especially thankful for my friends right now since finding out that Jessica's heart disease is progressing. So many times I have received bad news about Jessica and my heart sinks... I feel like throwing up and I go into a depression. I get angry and want to yell at God. Hasn't this child suffered enough?! I have realized that these are normal emotions and I allow myself a couple of days of mourning... a couple of days to digest the news and let reality set in. I begin to seek more information about the diagnosis and prognosis. What are our options - if any? I also begin to realize that I don't need to go through this alone. I have a wonderful husband who loves me and loves his daughter beyond measure. We have had to pull through so many devastating blows over the years.... many marriages have broken up over much less and I am soooooo glad to have my eternal companion still by my side. He is my BFF. I know, I know... many people say that your spouse doesn't count as a BFF ("Best Friend Forever" for all you non-texting people - *hi Mom!*) ... but my husband is my BFF. I am so blessed. Did I mention that I love him and that we have been married for 22 years?

We are also blessed to have family who care about us and who check in on us from time to time. I am also thankful for my other family... my church family. Two weeks ago Karl talked to our bishop and told him about Jessica's new diagnosis and how hard it is that her heart is deteriorating. The bishop asked our ward (congregation) to please keep Jessica in their prayers. Jessica's name was mentioned in very single prayer that day. For all you LDS people out there, you know that's a lot of prayers! ;-) Many people came up to Karl and offered comfort and concern. I was at home with Jessica and Karl came home with tears as he told me of all the people who were praying for us and for Jessica. My visiting teachers came over and wanted to know how they could help. I finally conceded to allow them to bring in dinner for Thurs night. (which they did. Jessica asked for tacos and they brought tacos, beans and spanish rice! Delicious!) And to top it off, later that evening another family from our ward, the Womacks, came to our house riding their horses! The Womacks are the ones who came to Jessica's birthday party dressed up as Jack Sparrow, Elizabeth Swan and Will Turner. The Womacks came on 4 horses and Jessica got to go outside to pet them. After a few minutes they offered to let Jessica ride one! It has always been Jessica's dream to ride a horse. 3 years ago a pony was brought to our house but she was too nervous to get on it. This time we had 4 full-grown, BIG horses and she wanted to ride one! Karl and another gentleman from our ward helped boost Jessica up into the saddle while Sister Womack held the reins. The horse, Penny, kept stepping aside a little and there was Karl and Brother Mack hoisting Jessica into the air with her legs in a sideways "V" trying to get onto the silly horse! haha! Fortuntatley that only took a couple of minutes and then Jessica was sitting in the saddle! She was so proud of herself that she even knew to hold onto the horn of the saddle. I took pictures as Sister Womack led Penny slowly down the street, Karl walked along side by Jessica just "in case" and Justen pulled the oxygen tank in the cart trying desperately to keep up and not let the oxygen fall or the tubing get tangled. What a sight we must have been! Well, Jessica rode the horse for about a whole minute - then she wanted to get off. She didn't even want to ride her back to the house... she was done. LOL. Fortunately we weren't more than one house distance down the road so we slowly walked back to our house. (If Jessica walks very far or very fast she gets extremely "blue" and short of breath.) All this time Brandon had been holding the reins of Sister Womack's horse, Sophie. Sophie was enjoying eating our lawn. (Ok... it's not a lawn so much as weeds with some grass mixed in due to our very active monsoon season. Most of the year we have just dirt and a few dry weeds.) Brandon did a very good job making sure that Sophie didn't wander into the street or poop on our vehicles. hehe... We are very fortunate to have such wonderful friends who made helped make one of Jessica's dreams come true. [I will have pictures of that event soon. Jessica wants them on her blog so I'll let you know when they are up over there.]

I absolutely have to mention the online friends I have made. 7 years ago I got the internet in my home and started joining support groups for families with children/adults with CHD (congenital heart defects). I have come to know and love so many of those families and have even gotten to meet some of them in person! When I sent an email to those groups and posted here on my blog, I was overwhelmed with the love and support shown to me. I also received a couple of emails from families who have experienced similar situations and have used some medications. Those assisted me SO MUCH when I spoke to Jessica's pediatric cardiologist. Gone are the days when I felt so alone, bewildered and unprepared. It's true that Jessica is especially unique and that there is probably nobody who has experienced ALL the exact same medical problems that she has, but it is comforting to have families who have experienced some of the same problems or have used some of the same procedures, or the same drugs. Since I've started blogging I've made even more online friends who are just as wonderful. I don't get out much and the internet is my window to the world - my way of reaching out to people, both in sadness and in happiness. I appreciate you all so much!

I can't forget to mention all the medical people out there that have blessed our lives. I know that you've heard about the home health aid who stole Jessica's morphine and the insurance company employees who can't seem to keep things straight but that is a drop in the bucket compared to all the wonderful people who have helped Miss Jess and our family. I've had to take Jess to the hospital 3 times in as many weeks for different heart monitor placements. Today we went for the 3rd one and we keep running into people that we know from previous hospitalizations. The nurses at the hospital, doctors who have cared for her - such as Dr. Copeland who did Jessica's heart surgeries, child-life workers who have helped her through several of those surgeries and many other procedures.... Tu Nidito social workers and volunteers..... the list goes on.

And last, but definitely not least... I like to think of my Heavenly Father as my friend. I may get mad at Him at times but He always offers a loving shoulder for me to lean on. I have seen so many miracles and I have been so blessed to be Jessica's mommy, even with all her medical, mental and emotional problems. Jessica asked me recently if Heavenly Father and Jesus cry when we are in pain and when we cry. I answered yes, they do. I have felt the compassion and love from above that I have offered to my own children.... especially through all the heartaches and pain that we've experienced with Jessica. My sons are highly affected by their sister's medical issues, and they each have their own issues they struggle with, but they are awesome and are 3 of my greatest friends too.

Now it's your turn. I know it's now Saturday but I started this post on Friday! lol... but it doesn't matter. If you want to do a "Friendship Friday" or just a friendship post, click on Mr Linky and leave your information! Don't forget to leave a comment too.

Mr Linky is up and running! I set it up differently and it's working! Woot!

AUGGHHHHHHHHHH!!!!!!!!!

OUR INSURANCE COMPANY IS STILL DENYING JESSICA AS A DEPENDANT!!!!!

***banging my head against the wall***

I just got ANOTHER call from the oxygen supply place saying that the insurance company is denying that Jessica is a dependant saying that WE have not updated Jessica's student status. We took care of that 2 months ago!

I guess I will put that to the top of my list of idiots to call today. I'm up to 6.

One last thing... Is the name Evelyn a man's name?

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.