Be The Blog

Bridget from Miles to Go Before We Sleep
gave me the following award:

Mark from Me And My Drum, who created this badge has this to say, "This badge is for bloggers who make their blogs their own, stay with it, interact with their readers, and have fun!"

I was shocked to receive this award, especially since I've practically been MIA in the blogger world lately. Thank you, Bridget, for this lovely award. I will display it proudly!

I now give the award to: (in no specific order)

Julia at: My Adventures and Antics

Emily Elizabeth at: Lovely and Amazing and Gabriel's Heart

June at: The Burnett Clan in CO

Jennyhaha at: Jennyhaha's Flawed and Disorderly

Melissa at: Adventures of an Awesome (sometimes) Mother

Chelle at: Crazy Thoughts

Jenny at: On Grace, God, being a spouse, mother, daughter, sibling, teacher, barista, and being myself throughout life
(who should also get an award for the longest blog name!)

Go and visit their blogs and see why I think they deserve the award. These women have not only influenced my life in a positive way but have also become my friends. I don't get to always read every single post of theirs but it's due to lack of time. Every word is worth reading and their photos are great too!

I Love..... Karl

This week's theme is I Love ____ and out of all the people I love,
chose to focus on my husband of 22 years... KARL

He is an awesome husband. He is even enclosing our carport to make a craft room just for ME!


He framed the bay window all by himself - the window didn't come with instructions so he looked online and figured out how to do it himself! Here he is showing off the framing of the bottom of the bay window before he covered it up.


He is such a good dad... he even goes to Disney Princess on Ice and lets his daughter cast a spell on him with a wand he bought her while at the show.


He is very active in the boy scouts with his sons. He got the pin when Austin received his 1st Class last month.


He even spends time with his daughter when she is in the hospital. Karl stayed over night one night when I had a migraine. He did a really good job taking care of Jessica.


I couldn't have ever asked for a better husband. I am so very blessed to have him by my side for 22+ years. He tells me that he loves me and that I'm beautiful every single day.

What does your handwriting say about you?

What Your Handwriting Says About You

You are a fairly energetic person. You know how do pace yourself, and you deal well with stress. You are somewhat outgoing, but you're not a natural extrovert. You think first before you act. You tend to be independent, rational, and logical. You are extravagant, over the top, and indulgent. You set trends and influence people. You need a bit of space in your life, but you're not a recluse. You expect people to give you a small amount of privacy, and you respect their privacy as well. You are somewhat traditional, but you are also open to change. You listen to your head and your heart. You are a good communicator. You work hard to get your ideas across effectively.

What Does Your Handwriting Say About You?

Need a Little Giggle?

Need a Little Giggle? Then head on over to my "Much Adieu About Nothing" blog. I recently added 3 videos that I really enjoyed. I've been neglecting my 2 other blogs and they are feeling quite jealous. I've had some serious posts here so I thought I'd share some funny things on my more fun blog. I keep shoving cake at my dieting blog to shut it up so you may not see an update over there for awhile. hehe...

Anyway, I just thought I'd let you all know that there's some fun stuff over there. I like to take time to giggle even when life is busy and at times overwhelming.

I hope you take some time to giggle every day too.

Continued Prayers for Paige

I have asked for prayers for Paige a couple of times and I'm asking for prayers for her again. The last time I updated was when she was being flown to another hospital to be listed for a heart transplant. Well, come to find out, she doesn't qualify for a transplant at this point due to many things, including brain damage from 2 strokes. Paige is unconscious most of the time and when she is awake she can't move, speak, track anything with her eyes or even respond to sound. Her oxygen saturations were very low and she has an infection. She took a turn for the worse and they had to take her in for a cardiac cath to try to open a blockage. That didn't work so they had to do surgery to correct it. Paige's oxygen sats are better now but not quite as good as the doctors were hoping for. She has been in ICU for over a month now. I can only imagine how upsetting and tiring this is for her parents. They are away from home, job and family, including their son. Please continue praying for Paige and her family. My heart truly goes out to them.

PINK

This week's theme is PINK... Jessica's and my favorite color! I hope you enjoy the photos!



Jessica riding a horse for the first time! Of course Jess is wearing PINK!



I took this picture of a sunset that I took out of the window of Jessica's hospital room last month. Several doctors and nurses were asking to peek through our windows since we had the best view! Notice the PINK among the many colors in the sunset.



Jessica all dressed up in her PINK princess dress and her PINK crown. She is all ready to go meet the Cinderella and Belle before going to the "Disney Princess on Ice" show.


Cinderella, Jessica and Belle in front of a PINK display advertising the Disney Princess on Ice show. Several girls from our local Tu Nidito group got a private visit with these princesses and then dinner at a Mexican restaurant before going to the show.


And finally, here is my PINK laptop computer bag! The good thing is that part of the proceeds go towards breast cancer research... the bad thing is that the zipper on it broke already! I'm waiting for the store to get more of these bags in so I can exchange it for another one. I don't want a boring black laptop bag... and of course I want to support the breast cancer research whenever possible.


I hope you have enjoyed a few of the pink pictures I posted. If my boys would only wear pink, they could be in this post too. hehe...

PhotoHunters: Practical and Smelly

This week is a 2-fer... a Two fer One Photo Hunters. I didn't get a chance to post the ones I had picked out last week so I am posting this week's and last week's together:

This week's theme is PRACTICAL:

Here is a Practical use for the quilt that Mrs. H and her mother made for Jessica:


Here is the front of the quilt... HARRY POTTER!!! Jess still loves it sooooo much!


A practical way for Jess to get to school and haul her oxygen... and her stuffed monkey whose head is poking out of her purple princess backpack. hehe.. she's so cute!


A practical use for a flowerpot (which I painted)



Last week's theme: SMELLY:


Smelly cow.....


Smelly dope... (no, I'm NOT talking about the officer. haha!)

Update on Miss Jess

It seems that the Procainamide is helping! wOOt! Jessica still has periods of time where she says her heart is beating fast or hard but they don't last long - and they don't seem to be happening as often. We saw the Peds Cardiologist last Thursday and he said that she looked good! We did an EKG and it is the same as prior to the meds (they did an EKG several times while she was in the hospital). So everything looks pretty good! The doctor asked me if I wanted him to order a holter monitor and I said yes. He asked me why since Jess seems to be feeling better and do I REALLY want to know he was going to order a holter monitor. Yes, I REALLY want to know exactly how many PVCs Jess is actually having. I'm still waiting for the hospital to call me to set it up. I haven't called them since it's been a hugely hectic week and I'm not extremely worried about it. Jessica told me last night that her heart was beating "crazy" so I put the pulse ox on her. She was having some PVCs but they weren't in a pattern - just random. After a few minutes she went into a pretty steady rhythm and she was able to settle down and go to sleep. She doesn't have nearly as many PVCs when she is sleeping so I told her that what she needs to do is to go to sleep and then they will stop. I'm not sure if that will work but maybe it will give her some motivation to relax and that it's OK to go to sleep. She has been afraid to go to sleep for fear that she won't wake up.

This last Monday we had our first Tu Nidito group meeting of the year (they go by school year). It was so nice to be back. Jessica LOVES going to Tu Nidito and even though it's quite a drive for us and Jess gets tired easily, she did really well! She just about knocked me over when at the beginning of the group they had us all join together and asked if there were any announcements - Jess raised her hand and said, "I am out of the hospital because they found a medicine to CURE my heart!" Several people started clapping and many parents who know us were looking at me with very puzzled looks on their faces. I stepped in and said, "I need to qualify that - they found a medicine to help get rid of most of the extra heart-beats". Jessica knows that. In fact, on the way there she asked me if she could announce that she was home and has a medicine to get rid of the PVCs. It was just a slip of the tongue since she was nervous. After everyone separated to their classrooms and us adults were alone, I broke down and cried, telling the other parents that Jessica's heart disease is progressing and even though we have a medication to help with the PVCs, she is dying. The medication won't prevent tachycardia or a sudden heart attack. I told them that we found all this out right before my birthday. Three years ago right before my birthday Jess was admitted into a home hospice program because she was having lung bleeds practically daily. Now she is having 10,000 PVCs daily. I wonder what she is going to do in 3 years from now for my birthday? I started laughing through my tears. Knowing her, she will still be here trying to find new ways to scare me. LOL! Later, one of the other moms said that I was her hero and that she didn't know how I do it... that I've been caring for a child with a lot of health problems for 19 years. She's only been doing it for 4. I told her that in 19 years from now she will still be doing it for her daughter because she is her daughter. That's how I do it. She's my daughter - so I do whatever I have to do. Another mom chimed in that we (meaning me and Karl) have a great sense of humor and that helps. I laughed and said that we have a SICK sense of humor. Jessica has been using her hand to show me how her heart feels. She will make a fist and then open it wide and close it, open wide and close it. I tease her and say, Jessica, it's when your heart does this (I hold my closed fist up) that we need to worry. She says, "Oh MOoooooom!" and laughs.

Today is a very special day for Miss Jess. The Disney Princess on Ice is in town and our local support group, Tu Nidito, has arranged for the girls to have dinner at a Mansion downtown and then have a limo ride to the show! They are providing 4 tickets to each girl. Jessica is sooooo excited to go! Austin wants to go to spend time with Jessica and of course Karl and I want to go too! Brandon and Justen don't really mind missing it so they will stay at home and hang out together... hopefully not harming each other or the house. LOL!

Last week Austin took a spill off his scooter and broke his fall with his face and knee! He broke a tooth and was pretty banged up. That was on Monday. Tuesday I took him to the dentist and they did an x-ray, etc. The dentist showed me where the nerve was exposed. Anyway, he needed a root canal. :*( The dentist was able to do about 80% of the root canal but had to stop because there was too much bleeding in the area. So we went back on Thursday to finish it up.... the girls at the office had forgotten to call me and reschedule so we made the trip for nothing! At least they are only a few miles away. We went back on Monday and they were able to finish the root canal and reconstruct the tooth BUT... of course there's always a BUT... the tooth is loose and he may lose it. He is instructed to not bite with that tooth and to just leave it alone. We are to see him in 2 weeks and see how the tooth is doing at that time. Of course we had to pay for the root canal and tooth reconstruction at the time of service. I told the dentist that I had a dream that we paid him $800 for him to fix the tooth and then he ended up pulling it just 2 days later! He said, "that's not a dream... that's a nightmare!" Fortunately we have good insurance and out of $1,000+ we only had to pay $250. Of course that's not pocket change for us but we were able to do it. Austin has been such a trooper through this whole ordeal. He was quite traumatised at first but was able to settle down. The first visit to the dentist he asked for the "gas" and he was quite comfortable with it. The second visit was supposed to be very easy and since the nerve was already dead, they didn't give him anything. The dentist told him that if he felt any pain to stop him and he would give him something. Well, apparently Austin didn't understand the last part and when they were done he came out pretty shaken up. It broke my heart! But like a real trooper he got over it pretty quickly and was able to go home and enjoy the rest of the evening. Austin has healed up quite well but here's a couple of pictures the day of his accident... in fact, his knee and face looked worse the day after!




It's amazing how God works... He watches over us and blesses us in ways we don't even realize. Karl and I have been faithfully paying our tithing, having faith that we will be blessed. Last Friday I had a Creative Memories event and had quite a few ladies come. It was pretty hectic to start with - we were short quite a few tables but with Karl's and Justen's help we were able to locate and set up enough tables. My customers had a great time and kept me busy the whole night. I had a couple of new customers who really enjoyed themselves and want to come to more events. After all was said and done, I had a lot of sales... all of which was product that I had in stock! I earned enough to be able to pay for the work done on Austin's tooth and still have enough to place an order to replace some of the product that I like to keep in stock. Of course I'll be paying tithing on the profits. (For those who would like to know, I earn 30% on the product I sell.... and of course that's 30% discount on whatever I purchase for myself.) I have a CM home event this Saturday with a very sweet lady. SHE contacted me and asked to do one in her home. I haven't done a home show in at least a year! So I'm kind of nervous... but one of my other really great customers will be there too so I feel more at ease. I keep telling myself that I don't need to be nervous... just go and enjoy myself. I love what I do and I love the products... I do this for FUN, not for the sales so if I make some money GREAT! If not, then at least I got out of the house and had some fun with adult women! hehe!

Last night my mom called and I was telling her that my stomach hasn't been feeling very well lately and that I've been having more anxiety. Then I told her about all the appointments that I've had with Jess and Austin and how exhausted I was before even going to my CM event and that I needed all weekend to recover. All the things I've gone through with Jess and Austin are very emotionally draining and then of course all the running around is tiring. My mom said that it made her tired just hearing about all that I've been through the last couple of weeks. I realized , well, DUH....... no wonder my stomach isn't feeling well and I've had more anxiety. LOL! I need to give myself a break and pray for a boring week next week. haha!

Are you ready for the cold and flu season?

Here's a little something to lighten the mood around here:

My british friend Dan is always talking about the "man flu" and how women get colds but he gets the "man flu". Another british friend of mine, Debbie, sent me this video and I thought of Dan immediately! I just had to share it here. Enjoy!

I swear, if the sick man on the couch had long hair, it could be Dan! haha!

Urgent prayers for our friend, Paige - and great update on Lindley

I had asked for prayers for our friend, Paige, last week who had some complications following her surgery. Paige has not done well and has been going down-hill. I just found out that she was flown to another hospital to receive a heart transplant because her heart is doing so badly. She is in critical condition and desperately needs a heart soon. My heart goes out to her family and loved ones. My friend Cathy has been updating me about Paige. Cathy had a son, Jason, who passed away under similar circumstances on Aug 9, 2001. I made a webpage honoring Jason here. Cathy and I had become good friends online before Jason passed away and we finally got to meet in person a few years later - the same time that I met Jenn (Paige's mom). Fortunately Cathy and Jenn live only about 2 hours away from each other and have been able to meet up more over the years. Cathy and her husband were able to go visit Paige just over a week ago. What great friends they are to support others when they have been through so much themselves. In fact, Cathy volunteers her time to the CHD quit project making quiltblocks honoring other children born with CHD. She made Jessica's quilt block not long after Jason passed away. Sorry I got side tracked, but I just love these families so much! I wish I could be there in person to hold a hand, lend a listening ear or give a hug when needed. I appreciate any additional good thoughts and prayers for Paige, her family and those who love her.

On a positive note, our friend Lindley did very well through her surgery and is at home! Of course she is still healing but how happy she must be to sleep in her own bed - or one of her sibling's beds! She is keeping her momma on her toes of course. Hopefully they will be able to settle in to a new routine and that Lindley will not be as nervous about everything. (((hugs))) to you sweetie! [You can read more about how she is doing on her mom's blog JennyHaHa Flaw and Disorder. ]

Man Made Card

I enjoy making cards as well as scrapbooking and of course have all my own tools to make them. Karl has his own workshop and loves woodworking and is currently building me a craft room. When I saw this video I just had to laugh... this would definitely be Karl's way of making a card! ENJOY!

Apparently this video isn't working here so here is the link to see it:
MAN MADE CARD

Prayer Request for two little girls

The first little girl's name if Paige. She had surgery to take down the "fontan" because her body has not been able to adapt to the "fontan" circulation. (The "fontan" is a surgery that changes the way the blood is circulated from the heart - it allows more blood to get oxygenated but sometimes the patient's body can't handle it and they develope many complications) Paige has had a very rough time this last year and it was decided that they needed to undo the fontan circulation in order to help her body out. Her surgery was on Monday and she is having some complications to the surgery. Paige has a blood clot just outside her brain and the doctors are trying to get it to disolve by putting her on blood thinners. She is having some difficulties that I think are similar to Jessica's after she had a stroke. We don't know if Paige has suffered from a stroke, I'm just remembering what we went through with Miss Jess. Please pray that Paige is able to recover from this surgery and that she is able to regain her health. Please pray for her parents as they are devistated and only want the best for her. Several years ago I went to KS to a CHD quilt show. I met Jenn in person and she is one of the sweetest people I know. I had gotten to know her online and it was awesome meeting her in person.

The second little girl is Lindley, Jenny's daughter. I had a prayer request for her a couple of days ago. Lindley was supposed to have surgery yesterday but her mom hasn't updated her blog and I haven't received an email from her... so I don't know how it went. One of Jenny's friends made a button that I am posting here and on the sidebar. I will post any updates on these two sweet girls as I get them.

Edit: I just got this update about Lindley:

Hello Friends!

Lindley's surgery went well yesterday! They were able to repair the valve instead of replace it, and she has practically no leakage now! The breathing tube was taken out before we even saw her. About 5 more tubes and iv's were taken out today. She still has a central line in that goes to the heart itself as well as a couple of iv's in her feet.

She went into surgery about 1 p.m. yesterday and was finished a little before 6:30 p.m. We've been really happy with the medical care she's receiving. They're keeping her fairly sedated. She's had her issues with pain and nausea, but they don't drag on. She's having a hard time understanding why I won't take the tube out of her neck or give her something to drink. She just wanted to see her twin, but Gracie was scared of her since she's hooked up to so many machines. So she still needs prayers for comfort and recovery.

We're so grateful for all your thoughts and prayers! I'll provide updates as I can.

Love,
Jennifer

Thank you for praying for my friends and their children. You all have been such an awesome support to me and my family, I appreciate your willingness to offer that support to these other families.

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