Two-fold downer

Can I just post a bunch of cuss words and be done with it? I've been avoiding this post... but it's got to be done. It's a two-fold downer so continue reading at your own risk.

Jessica's MRI CT scan showed narrowing of main blood vessels leading off the aorta to her gut. It is Ischemic and there's nothing they can do about it. Try to treat the symptoms. Good-bye.

At least that's how the phone conversation I was having with the GI nurse was going. *ahem* Excuse me? Do I offer her more morphine? What about the conversation I had with Dr. G about how much time we have? He offered to call Dr. V (Jessica's new pediatric cardiologist) and discuss it. I wanted to talk to him about whether it is time to put her back into hospice. "I'll remind Dr. G about your conversation and find out when he wants to see Jessica back in his office."

Bugger. Not what I wanted to hear... but it was what I expected. So I told Jessica that I had good news and bad news: She asked, "How can it be BOTH?" LOL I guess she's never heard that expression before. I told her that the good news was that she didn't have cancer. She's been so worried about cancer... her cousin Marcus has it, our next-door neighbor has it (throughout her whole belly!) and another cousin was just treated for cervical cancer... so she has cancer in her life and was so scared that she was going to have it too. So *whew!* no cancer! Then I said that the bad news was that she isn't getting enough blood to her gut and she cut me off and asked, "Am I going to die?!" I took a deep breath and said, "Well, Jessica, it's like with your heart. There's nothing more that they can do to fix it but we can give you morphine and try to help you feel better." So then we talked about a few things that help her tummy feel better like eating popcicles, jello and other soft things. (Oh crud! That reminds me that I totally forgot to put Jello on my list so I didn't get it at the store! ugh!)

Jessica is now telling everyone that her CT scan was clear. haha... sure... it was clear (as in devoid) of cancer... and unfortunately it's clear (devoid) of blood too! But hey, if believing that her CT scan was clear and that's good news... then I'm not going to burst her bubble. If that's what she needs to tell herself to get through the day then woo-hoo! I'll celebrate the good news with her.

So I've been looking up Ischemia of the bowels and everything leads to the fact that if it's not fixed then she will develop a blockage. Typical symptoms are throwing up, lack of energy, extreme pain.... all the symptoms that she had 2 weeks ago. I HATE THIS! I don't want her to have to go through this! So anyway, I'm starting a list of questions that I have for the doctors... such as... what the heck do I do if when it happens again and doesn't resolve it's self? Should I have some anti-nausea drugs on hand or let her throw up until she's severely dehydrated? The poor kid can hardly eat anything and has lost 12 lbs in just the last few months. She will want something and I'll fix it for her only to have her take two bites and then say, "My tummy says no." Do I watch her slowly starve? She really shouldn't lose any more but at the rate she is eating (few bites here and there), she is bound to continue to lose weight. Last night I made tacos and she ate several of them! I was tempted to take a pictures of her actually eating! BUT... she's been up all night now and still has a tummy ache. I'm supposed to go to church later this afternoon but I just don't know if I'll be up to it now. It's been a long night.


OK, I told you that this post was two-fold:
Marcus is having more problems. He is dizzy all the time and his eyesight is blurry. He can't even watch tv or play his video games. He has to use a walker to get around the house and has to be in a wheelchair to go out anywhere. Just 3 weeks ago he was in band camp for the marching band and now he's in a wheelchair and can't see well. He is getting quite swollen from the steroids too. Marcus had a CT scan on Wednesday (the same day Jessica did). They were looking to see if he is developing fluid on his brain. Nope. The biggest tumor is in the back of his head and it is putting pressure on the area that controls the eyesight. He gets his 2nd dose of the new chemo on Wednesday. Let's pray that this chemo will shrink the tumors so he can at least spend some time doing things that he enjoys. He can't go to school so he is at home... staring at the ceiling most of the time. But... my mom flew to UT and is staying with them to help out. She said that she has spent some time with Marcus and that he does come out of his bedroom and spends time with the family. I talked to my sister last night and she said that he doesn't complain. He doesn't really say much but he doesn't complain. He has gone out with his mom and grandma to the grocery store and has been out to a couple of other places so at least he's willing to go out and do some things.


There's a lot to be learned from these two cousins, Marcus and Jessica. I'm so impressed with Marcus's courage and strength. I sure would be upset if I couldn't see and do any of the usual things I enjoyed doing. This should be Marcus's senior year at school. He was really looking forward to it but isn't complaining. Some people would be too shy to go out in a wheelchair, especially being very swollen up from the steroids - but not Marcus. He saw a few kids from school at the grocery store and talked to them. He is awesome. And Jessica... what can I say about her? She does complain - but she sure has a lot of reasons to! But she is determined to do the fun things she wants to do. She will be laying on my bed, telling me how much she hurts but will laugh when I tickle her feet. She will play the Wii and other games, watch her favorite tv shows and trace her pictures. She loves telling everyone about Pokemon and has a wall covered in pictures of Pokemon that she has traced, colored, cut out and taped onto the wall. (good thing it has wallpaper that we hate so we don't mind her ruining it. haha!) When I'm in pain all I want to do is go to bed and hide. Not Jess. She will still do what she loves to do and will try to be happy while she's at it.

I truly appreciate all the messages of support posted here, emails and phone calls that I receive of hope, comfort and support. There are so many times that I just think: I'm so tired. I've been doing this for 20 years. Jessica is really demanding more and more of my attention - even when she doesn't really need it. For example: I'm barely headed to bed at almost 8:00am because I've been up all night with her. But I realize that this is what God has called me to do and I will continue to do my best. I love Miss Jess and I love my sons too. I'm trying to show them in different ways how much I care about them. I'm so proud of my sons and hope for the best for them. There's so many things I wish I could do with them right now but I can't. I know there's a purpose for all this and only HE knows all the blessings that are in store. I just need to keep up the faith.

I almost left out Karl - my wonderful HH (handsome husband). Although he does find other funny things that HH can stand for: hefty husband, hungry husband, hunk-uv-a-husband LOL!

Heartbreaking news about Marcus - please keep praying!

Here is what my sister, Karen, wrote on Marcus's carepage:

"We arrived at Hawaii and Marcus woke up sick the next day. We ended up taking him to the ER on Tuesday (2nd day), spent the day doing CT'scan MRI's. They found another tumor in the back of his head. They put him on steroids and he did feel well enough to go to Pearl Harbor the next day for a few hours and went on his helicopter tour. We got him out in the water on the beach for one night and then spent a little time by the pool, out in the fresh air for a while.

After landing Sunday morning from our flight, he sat down and all of a sudden he got an excruciating headache. It was so bad that we took him immediately to Primary Children's where he was admitted. It took hours to get the pain to go away. They did another MRI and found that there are many little spots around the brain of tumor. Surgery is not an option, but we are going to start him on chemo, hopefully this week, that is a new medicine called Avistin. It has proven in some cases to stabilize the tumor and even shrink it in some cases. We are hoping this will at least buy us a little more time.

Thanks so much for your thoughts and prayers!"

John, Marcus's dad, has been traveling back and forth from the hospital to home (2 hour drive each way) and Karen has been at the hospital this whole time.... she hasn't even been home since leaving to go to Hawaii. I haven't been able to talk to Karen myself since her cell phone went dead but my Mom has been in communication with her and then of course she's been letting everyone in our family know what is going on. Here is a portion of an email I received this morning from my mom:

"Just a late update on Marcus, Karen called me last night right before her cell phone went dead. For those of you who tried to call yesterday, they were with Drs. all afternoon and they even did the spinal tap yesterday. Dr. Bergers is back and really covering every detail and taking care of business. They went down and saw all the pictures of MRI, recent and 3 weeks ago.. It's unreal how much and how fast it's all going. 3 wks. ago, there was not really anything there and now it's all over the place. The clusters of cancer are inside the brain growing and in the lining of the brain too. Just in the last year, since Marcus had the first tumor, they have new chemo that will shrink tumors and stop growth of them too. They don't know how much time that will buy, but it will be quality time. There are few side effects of the chemo. They will wait until they finish the chemo and then maybe clean up spots with radiation, depending on situation. They don't want to do full brain radiation because he had so much on the front last time. He's feeling much better, Karen and Marcus are still in hospital and don't know when they'll go home. The pain with this, has been lots worse than with the first one, but it's pretty much gone now. He's been cooperating and doing really well, his balance is better. They will start the chemo soon, before he goes home. If they do nothing, he wouldn't last even a month. He wants to do chemo and whatever they want to do. John went home with the boys last night and will come and bring Karen relief. They all are sounding better on phone and in good spirits. We appreciate all your prayers in their behalf, we know that Marcus' mission here isn't finished yet and that he will recoup and be OK for awhile, that's in God's hands. We love you all!"

Of course we have all been devastated that the situation is so much worse than we first thought. My mom called me Sunday afternoon to let me know that Marcus had to be rushed to the hospital and that he was in ICU. She also told me about the many clusters of tumors and that the neuro surgeon said that there was nothing he could do. They hadn't had a chance to talk to the oncologist yet so we were thinking that there were probably no options available. I couldn't sleep all night and I couldn't call my sister because she couldn't use her cell phone in ICU - and I knew how incredibly tired she must have been and wanted to make sure she was able to spend some time with Marcus.

Last night I told my kids about Marcus having more than one tumor. I had told them that they had found one while he was in Hawaii but wanted to wait until I knew whether Marcus had any treatment options before telling my children about the rest of the tumors. Jessica asked me straight out if Marcus could die from this. I had to tell her yes. BUT he could still have a lot of time left. I told her that she was a rule-breaker. She looked at me like, "WHAT?!" LOL I told her that she broke all the rules because she should have died years ago and look at her! She said something like, "Yeah! I'm still alive!" I told her that Marcus can be a rule breaker too. Jess said "Donna can be a rule breaker!" (Donna is our next-door neighbor who is also battling cancer). Brandon spoke up about the fact that when we die we go HOME. We had a discussion about where we go after we die and how loved ones will be there to greet us. It will be a joyful reunion and no pain of any kind. Jessica is very afraid of death so we try to discuss it whenever we have an opportunity. Jess has had separation anxiety ever since she was a baby. 4 years ago when she started having lung bleeds she became even more anxious about being away from me than ever before. I believe that is one reason why she fights so hard to hang on during those very painful times. Of course she loves life and loves being with family and friends.

Quick update on Jessica: She was finally able to eat a little bit last night! She asked for EEGGEEs so Karl bought her a 12" sub. It took Jess a few hours (I would cut a small pieces for her) but she ate 1/2 of it last night! I kept teasing her that I needed to take a picture because I was so surprised that she was actually eating! I still have the other half of the sandwich in the fridge for today so hopefully she will be able to eat it too. I left a message for her GI doctor yesterday - he and his nurse were out of the office all day, but the secretary assured me that she would give them the message today. Jess was still in a lot of pain all day and couldn't even eat much Jell-0.... but at least she isn't throwing up and has felt up to playing the Wii and drawing and writing her stories. It's so good to see her smile again.

Some good news!

Good news! Ravyn got her driver's license! YAY! We are so proud of her.

Way to go, Ravyn! We Love You!

Prayer request for Miss Jess

Oh goodness, where to begin? Jessica has been having tummy problems since.... forever + a day, but lately, like the last week and a half, she has had more and more pain. This girl is on quite a few medications for her tummy pain and sees the GI doctor regularly. I just spoke to the GI nurse two weeks ago and we agreed to continue one of the meds (that is only supposed to be used occasionally) since Jess is still having trouble. Well, on Friday Jess came to my bedroom, flopped herself onto my bed and said her tummy hurt extremely bad. Karl and I have started giving her morphine when her pain gets this bad so we gave her some and within 20 minutes she was throwing up. All afternoon she was weak and was throwing up. Her primary care doctor had left for the weekend so I called the Peds cardiologist to prescribe an anti-nausea medication. Our PC has retired (*sob!*) and her new one wasn't available so I got to talk to a new PC. He asked me what Jessica's heart condition is and her age. I briefly explained it to him he said, "wow, you have done a really good job with her!" Anyway, I was so glad he called it in! It took quite awhile to kick in and the next day Jessica still felt like she was going to throw up... she didn't though and was able to start taking in some fluids. Today her tummy is still very upset and anything "solid" makes her want to throw up. She is getting sick of Jell-O, soda and popcicles. Does anyone have any ideas as to what would help settle her stomach?

Jessica has lost some weight lately and I think it's because she is having a hard time finding anything to eat - anything that her tummy can handle. I'm going to call the GI doctor again tomorrow but I'm really worried that there's nothing that can be done. Right now I feel that she is battling a virus and of course it takes her body longer because of how weak she already is, but she has been having a lot of pain even before this virus hit. My friend, who is a cardiac nurse, told me that with Jessica's low cardiac out-put then of course she will be having more stomach pain since it isn't getting the blood flow that it needs. In fact, she told me that she is going into multi-organ failure. We discussed how almost every bodily function of Jessica's requires medications to help it along. I knew this would happen. I knew it was happening. And it could be this way for a long time yet. It's so hard to see her in so much pain - every single day. She still tries to remain chipper but it is hard on her too. Please pray for her to be relieved of her horrible pains and is able to eat something. Pray for strength for Karl, our sons and I as we move through more difficult times ahead.

Update on Marcus

First of all, thank you to all those who have been praying for Marcus and his family. Marcus was diagnosed with a 2nd brain tumor while on his Make A Wish trip to Hawaii this last week. After receiving some steroids in the ER in Hawaii on Tuesday, he was able to go on his tour of Pearl Harbor the next day like he wanted to. That was the main part of his wish and he was able to go! yay! He and his dad were able to go on a helicopter ride the next day. They had a good time. Unfortunately he wasn't up to going on a submarine ride on Friday. My BIL, John, took the other 3 boys and went while my sister, Karen, stayed at the hotel with Marcus. They are scheduled to arrive home today and Marcus will see his doctors in SLC this week. I'm sure they will need to do more tests before they find out if this tumor is even operable. I talked to Karen on Friday night and she said that they are all ready to go home and deal with "it". They have enjoyed being in Hawaii (their hotel is right on the beach!) but it is time to go home and face reality. Of course we are praying for the best outcome possible.

Thank you for your good thoughts and prayers for us!

Quick Prayer Request

It's extremely late and I'm soooo tired but i wanted send out a quick prayer request before I head off to bed.

I've mentioned my nephew, Marcus, who is battling brain cancer, here before... well, he and his family are on their Make A Wish trip in Hawaii right now... long story short, Marcus got sooo sick that they had to take him to the ER. A CT scan and MRI later they have found ANOTHER BRAIN TUMOR! I called my sis and talked to her about it as soon as I got the email from my mom. Apparently the tumor is in the back of his head but they don't know exactly where nor how large. The doctor who found it (in Hawaii) contacted Marcus's doctor in Salt Lake. After all was said and done, they sent Marcus "home" (back to their hotel) with steroids for the swelling and some pain meds. They are going to finish their trip in Hawaii and then see their doctor next week and make some decisions.

Marcus is supposed to have a tour of Pearl Harbor (his wish!) tomorrow today. I really hope he feels well enough to go and can enjoy himself. He has earned it - and he has some more really tough things to deal with when he gets home. Please pray for Marcus and his family.



I hate, hate, HATE THIS!

Typo???

I just got a note from the new Peds Cardiologist. I'm going to have to get used to the way he does things I guess. Dr. D would call usually call me and give me the results from tests... although there were a lot of times that I would call him first. LOL I should call Dr. V because in his notes he said that Jessica's holter showed 1100 PVCs. What? Is that a TYPO or is this medication really helping???

Jessica has had multiple holter monitors since August of last year and most of them showed between 8,800 - over 10,000 PVCs. This one said 1,000! WOO-HOO!!!! I'm so happy that this medication is helping her and it doesn't seem to be aggravating her asthma. We are soooooo blessed!

Lately I've had many opportunities to talk to Jessica about having faith. It's nothing less than a miracle that she survived her 2nd heart surgery... a Cardio-thoracic surgeon stood there, looking at me in the eye and said so. It's nothing less than a miracle that she got her eyesight back after the stroke she had during that surgery. Many times she has cheated death including 4 years ago when she was having so many lung bleeds that she would carry a bowl around because she would cough up blood at any time. We prayed for answers and ours came in a little bottle of blue liquid. Morphine. It was a long shot but we tried it and it worked. Hospice was very helpful in the process of finding our miracle and it was very hard when they left us. But Miss Jess is only rarely - I mean, EXTREMELY rarely coughing up blood anymore. Jess said, "But now my heart is having 10,000 PVCs... and I told her to have faith that we would find another miracle to help her with that. I was soooooo excited when I got the paper in the mail and told her about it. I tried to tell her that 1,000 PVCs was 10 times better than 10,000. Blank stare. Being a 7 yr old in a 20 yr old body is a little hard... so trying to grasp the difference between 10,000 and 1,000 was kind of hard for her. So our conversation went something like this:

J: "Is 1,000 better than 10,000?"

Me: "Oh yes! MUCH better!"

J: "Is 1,000 better than 9,000?"

Me: "Yes!"

J: "Is it better than 8,000?"

Me: "Yes! And it is better than 7,000 and better than 6,000, and better than 5,000, and better than 4,000 and better than 3,000 and even better than 2,000!"

J: smiling from ear to ear: "Wow, that is good!"

Jess is scared of dying and also feeling very sorry for herself that she isn't like everyone else. She REALLY wants to have a boyfriend and get married. She wants someone to love her and take care of her. I've tried several different approaches with her since she has set in her mind that since she is 20 then she is old enough to have a boyfriend - so where is he? LOL So the last week or so every time she brings it up I remind her of all the miracles on her life. I ask her if she has faith. Does she really believe that Heavenly Father and Jesus really want her to be happy? She says Yes! Then she needs to have faith that they are watching over her and are going to make sure that she is happy.... but she needs to try to be happy NOW... and not waste her life away wishing for something. She needs to have faith while she waits and God will take care of the rest. (As I've mentioned here before that in our religion we believe that we will all be resurrected - but not reincarnated.) I'm positive that those who don't have a chance to marry and have children in this life will have that opportunity in the next - after being resurrected. Wouldn't that be wonderful for her to have a body that is perfect? One that can walk across the room without getting winded? One that won't need oxygen or a wheelchair? One that will be able to do anything she wants it to? So she needs to learn to have faith and patience. Oh my... that is a hard one! I've been telling God that I've learned patience, it's time to move on! hehe... I'm joking of course but I tell ya, some days I really feel like it. I've been taking care of Miss Jess - who has been very ill her whole life - for 20 years. I'm tired. BUT I wouldn't trade her for anything. I don't want her to leave ... but she does deal with a lot of pain. Every single day. That's hard.

We are so blessed though. We have so many people who love us and support us. I had better get to bed since I'm taking Miss Jess to have lunch at her fav restaurant: IHOP. Our SUV is out of the shop and so I can take her/ the wheelchair/ and oxygen to have a nice lunch with one of our friends from "Tu Nidito". FUN! I hope it's not too hot - nor rainy... the wheelchair lift if on the outside of the SUV and we don't want her motorized wheelchair in the rain!

Anyway, I want to keep up with my blog more often and not leave you all in the dark - so turn on a light already! ;)

Coming up in the next week: Brandon's birthday on Saturday, Sunday is always busy with church stuff (usually Karl and the boys go but I may get a chance to go too - IF I get some sleep before then), Monday is Brandon's actual birthday - 15 yrs old!!! (*yikes!), Tues is a court of honor - both Brandon and Austin have 5 merit badges that they worked on at scout camp and Brandon is advancing in rank!, and Wednesday Brandon has to have ORAL SURGERY! None of us are looking forward to that day. Poor Brandon - please keep him in your prayers.

My Life.... busy as usual

Oh My Word! I can't believe it's been more than a month since I updated this poor neglected blog! Soooooo much has happened... but then again, it is my life! LOL

Let's see.... what has happened:

Jessica: Had a birthday, turned 20 years old!!!!!!!! I can't believe it! The big bad CHD (congenital heart defects) that tried to take Jess multiple times while she was an infant, and again as a child, as a teenager we almost lost her ... but she has made it to "adulthood!" Something Karl and I never dared dream would happen. Of course she is still at the level of a 7 yr old but she has lived for 20 years and that's a huge accomplishment! I'll post pictures soon... I promise! Jessica's wisdom teeth are trying to come in so I'm going to have to get her in to see her dentist. He said that he will take a look but who knows if he can do anything about it.

Justen: Justen and Ravyn have decided to post-pone their wedding until December. After taking a look over living expenses, etc, they realized that Miss Ravyn needs to have a job and help financially before the wedding. It's a huge reality check, isn't it? I think that one of the hardest part of growing up is having to provide for yourself and your family. Karl and I struggled financially for quite a few years and still have to watch what we buy. It's rough going sometimes but I'm sure that Justen and Ravyn will do well once they get everything in order. We are still so happy that Ravyn is going to be a part of our family. At least it won't be so hot in December! The wedding pictures will be less likely to have sweaty, melting wedding party in them. They wedding cake won't have to be served in glasses because it melted either. hehe! I am so glad that we have more time to get everything together, too. Ravyn and I are making her bouquet... I have a picture of her holding her partial bouquet but I think I'll wait until it's completed before I post a picture of it.

Brandon: Poor Brandon has to have oral surgery on July 30th. He has an adult tooth up on the palette of his mouth which has to be surgically uncovered. They will attach a small chain to it and then to his braces and it will slowly pull that tooth down. When it's time, the baby tooth which is in it's place, will be pulled and the adult tooth can come down where it should have gone in the first place. This is the eye tooth and the oral surgeon explained to us how important the eye teeth are. According to the x-ray, his wisdom teeth are ready to be pulled too so we are going to do all that at the same time. It makes sense to sedate him only once and have him recover from surgery only once. I feel bad for him since I know how hard the wisdom teeth extraction is. I had it done one summer while I was in HS and my family went on a trip 2 days afterwards. I had the choice of either going with them or staying for a week with my aunt and uncle. I decided that I might as well go on the trip so I did. It wasn't the most enjoyable trip I've ever been on but I survived! Brandon will survive too. He also has a birthday coming up on July 28th! He will be 15 yrs old. We are having his party on the 25th. He is going to get the Mario Kart for the Wii. Yes, we broke down and let Jessica buy the Wii last month with her government money. Karl and I swore we'd never buy it and at least WE didn't. haha... j/k of course. Since Jess doesn't feel well enough to go out much we figured she should be able to use her money to buy something to help entertain herself. If the kids fight over who gets to play it then nobody does. We've found which games are too strenuous for her to play and which ones are OK for her. She gets so "blue" so easily, we have to watch her or she will be trying to catch her breath and looking like a purple grape. Poor kid.

Austin: Austin is doing well. He is involved in scouts and does his calling really well at church. There's not a whole lot going on with Austin except that he told me that he needs some "Mom and Austin" time. I have been very preoccupied with so many things that I guess I haven't spent enough time with him. He wants me to watch a movie with him so we will definitely have to do it! He and I really need to start a walking program. We are both feeling the effects of not getting enough exercise and being around food all day (all night for me).

Karl: Karl has been working his cute pattootie off hard. He's taken some off-duty jobs, had his schedule changed around and around, and helping out an officer who was involved in a near-fatal accident. Actually, I have spent some time with the officer's wife too. Officer Bobby suffered severe head injuries and wasn't expected to survive. It's been 3 1/2 weeks and he is recovering from his other injuries but his brain has a lot of healing left to do. He recognizes his wife and can walk but he is still very confused and emotional. Please pray for him and his wife, Kristi, that they will get through this. They have two small children who are staying with grandparents (who live out of state) right now. This is an amazing couple and we really hope that Officer Bobby will make a full recovery.

Karl has also been working on my craft room & laundry room and it is now time to do the texture on the walls and ceilings. One of our friends has a texture machine and is supposed to come on Saturday to make a huge mess texture the place. I'm so stressed excited! At least after the texture is done, dry and cleaned up... all we have to do is paint and put in the flooring - - - then I can MOVE IN!!! Do I dare hope?

Nancy: is in great need of a gardener... or more likely a crew of people to rip out tons of weeds that have been growing since the monsoon season started. I'm also in need of a maid... or someone with a back-hoe to clean out my mess of a house! The monsoons have brought the much needed storms to our area but of course my fibromyalgia doesn't like storms so I've been dealing with pain. Lots of it. I also have no time to myself except for the times I stay up after Jess goes to bed. Some times it's not until the wee hours of the morning. I'm not kidding. Look at the time stamp on this post. I started this post at around 3:15am and it's now 3:57 am. But I digress.

My sister, Alice, had a baby boy last week! Joseph Hyrum Vivaldo. We got to go and visit them and pass the baby around. He was 3 days old and soooooo cute! Poor Alice looked tired so we didn't stay terribly long. (we also respected her enough to not take pictures of her at this time) Our crew - of 6 7 (sorry Ravyn, I almost forgot to count you!) can take a toll and anyone! Jessica was so proud of herself for being able to hold such a tiny baby. Justen and Ravyn got to hold him too. I think Ravyn was a little surprised that Justen knew how to hold a baby so small but I reminded her that he held his younger brothers when they were babies and he has also held other baby cousins.

Here is Jessica... so proud to be able to hold her new cousin!

Jessica and Hyrum

Ravyn taking her turn holding Hyrum while Justen waits his turn.

Jessica playing with her other cousins, Jesse, Julie and Marissa - who are all so proud of their baby brother. (Jess had an extremely late night that night and has not been up to par since. Going out really wears her down and she has to have recovery time.) But she had a great time that night and it was all worth it!

And last but not least....

MY BABY!

She's a 2005 Nissan Altima. Karl has been stressing out so much over the price of gas and the fact that our SUV only gets 10 mpg! This car gets 22 - 31 mpg, can fit all 5 of us and the oxygen goes in the trunk. Karl is so smart... he figured out that the oxygen tubing can come through a crack in the seats from the trunk... the seats can fold down and make the already huge trunk bigger so that is an awesome way for Jess to have her O2 and it not be in the way. We still have the SUV for the times that she needs her motorized wheelchair - which would include trips to the doctor, the mall, or any other long-distance walking is required. She doesn't need it to go to some one's home so here we were (in the picture) getting ready to go to grandma & grandpa Jensen's house on the 4th of July. (pictures of that fun event to come later too!) Karl has been so much more relaxed at the price of gas now that we have a much more economical car. We were able to put 1/3 of the price down so our payments are very reasonable. It's a beautiful car - inside and out. Only 30,000 miles on it and still under warranty. Sorry guys... it's ALL MINE! (Well, I let Karl drive it from time to time though... hehe!)

So anyway... these are the major updates that I can think of... and now that it's nearly 5:00am and it's starting to get light outside, it's time for me to go to bed. No, I'm not a slow typist... I just got to playing with the SD card that can fit nicely into my laptop (which I am using right now) and I downloaded 3 month's worth of photos. Now I need to transport them to my portable (pretty) hard drive. :) *I'm soooo spoiled!!!!*

Life is Busy, as usual... update on our family

We have been pretty busy since we got home from the hospital. Not only am I starting to panic that we have just over 2 months until Justen and Ravyn's wedding, but I've been working on planning Jessica's birthday party which is this Saturday, May 31, I had to take all other 3 kids to other doctors appointments several times this week, we're preparing for my dh to leave town on Sunday (for work), preparing for him and both younger boys to leave for scout camp right after dh gets back (hence some of the doctors appointments) and we just found out today that Austin needs glasses. *sigh* I was really hoping he would be able to avoid them but apparently the Jensen gene skipped a generation and hit all 4 of my kids. I believe that all 3 of my hubby's siblings wear glasses but he hasn't needed them until he's gotten older and then only to drive at night. I know that needing glasses isn't the end of the world but it's one more expense that our family has to deal with right now and of course it will take Austin awhile to get used to them. Justen's car came back from the shop at a whopping $1500+! Karl and I decided that paying for those expenses is far more important than trying to provide them with a little honeymoon so we took care of it today. The kids need a reliable car to help them get started out in married life. Justen has a job and they are looking at apartments near his work. Ravyn is looking for a job but it's hard since she lives quite far from town and has no transportation(for right now). Buses don't go out that far so hopefully she will find something close to her new home once she and Justen are married and live in town.

Life is dealing us a lot of changes this summer. Austin will be going to middle school for the first time (in August), Justen is not only getting married but it moving out of the house for the first time, Brandon will move into Justen's old room so he and Austin will have their own rooms for the first time too. One more scary thing added to the table... Brandon told me that he will be eligible for his driver's permit in 8 months!!! Thank goodness it's not this summer because I just can't deal with that change yet. LOL! And lo and behold... Jessica is going to be out of her TEENS! She told me today that this is her last week as being a teenager. WOW! I don't know what else to say but WOW! Who would have ever thought?

So here we are... thumbing our noses at the CHD defects that Jess was born with. It tried to take her many times during her infancy, her childhood and teenage years. Well too bad Mr. CHD, Miss Jess is making it into adulthood! (and yet she is still my little girl who still loves Barbies, coloring books and tracing) I love it!

By the way, we are home

ooooooops! I sent out emails to update people but forgot that my poor blogs still thinks that we are still in the hospital. We actually got sent home the very next day! I was a little worried about going home so soon but apparently it was the right thing to do. Jessica has been coughing a little bit but then again, she always coughs a little. I'm so relieved that she didn't have a sudden asthma attack after taking the medication. There is still a possibility of her having problems with the medication but so far, so good. I just need to keep an eye on her breathing and coughing (as I always do) and alert the doctors if anything changes. We are going to have to do a holter monitor sometime in the next week or two. I need to call the PC tomorrow and see when he wants us to do it. Jess has complained of her heart beating weird once since we've been home but that's not too bad considering she used to feel it multiple times a day, every day, last summer. Hopefully this medication will help stop the PVCs too.

I was soooooo glad to come home. I swear, those chair things that pull out into beds are HORRIBLE! I've tried using a cot that Karl uses when camping, but it didn't seem to be any better than the chair. I'm just getting too old for this. I keep saying that I've been doing this for almost 20 years but the truth is, it's almost 21 years. You know, Jessica is turning 20 next week but I took care of her and practically lived at the hospital with her the whole first year of her life - you know, before she turned one year old! So it's really 21 years that I've been taking care of her 24/7, watching her breathe, taking her to doctors, sleeping in the hospital with her, walking the hospital halls with her, etc. I'm too tired to type everything I do for this child. LOL My point is that I've been doing it for a long time.

I had a little chat with Dr. Samson, one of the Pediatric Cardiologists who specialize in electrophysiology. He was actually the one who admitted Jess to the hospital and Dr. Valdez checked in on her too. They work together with the other team of PCs. I asked Dr. Samson who was going to get the "short straw" and take over Jessica's case once Dr. D retires next month? He laughed and said, "Probably me... you know, we go way back! I remember holding her on my lap as I did my reports when I was a resident." We had been talking about how he was a resident here way back when Jess was a baby and we were "frequent flyer's". He said that there was a catch to that though... he is going to New Zealand in July and won't return until December! He will be working in the cath lab and learning new techniques and bringing them back to Tucson. I told him that I am a member of the PdHeart support group and that I know there's families on there from New Zealand. I should warn anyone on that list to watch out for him! He laughed and told me to say, "Whatever you do, don't go into the cath lab with Dr. Samson!" LOL So if any of you are in New Zealand, I'd love to warn you about Dr. Samson... except that I only have good things to say about him. He is a very gentle and kind doctor and he's pretty smart, too. :)

Dr. Samson said that he and Dr. Valdez will work together with Jessica since two heads are better than one. I mentioned that Dr. Klewer did Jessica's cath a few years ago and we really like him too. Hey, the more the merrier then! I think it's great that so many pediatric cardiologists are willing to work together to help Miss Jess. Dr. Donnerstein is retiring next month and we are really going to miss him. He said that as far as he is concerned, he is not retired when it comes to Jessica.... well, I guess he had better give me his home email address then. I'll let her send him emails everyday. LOL Jessica's new thing to do is send emails to me... they are really cute. She says things like, "I love you mom signed aka mary potter malfoy and princess jessie married to legolas" Of course there's no punctuation or anything and if you don't know who her "aka"s are, she will be happy to tell you the whole story - actually two stories that she has come up with. They could be considered fan fictions. Two nights ago I caught her sending an email to my sister, her aunt Karen. It was really cute and in it she told Marcus to be sure and take his medicine so it can help him feel better. Marcus is my nephew who is battling brain cancer ... he is having some emotional effects from the damage to his brain from the tumor and he won't take his meds... which is not helping. Anyway, if any of you would like some cute emails from Jess, let me know and I'll have her email you! She loves people and loves talking to them. I wonder where she gets that from... not that I've gotten off track of what this post is to be about or anything....

I wish to ask if any of you have dealt with anorexia? There's a young lady who was Jessica's roommate who is in bad shape. When I first saw her I wondered if she was an AIDS patient since she was so frail but after a couple of hours in the same room I knew what was wrong. I felt so bad for her. I have to admit that I got tired of listening to the 10-minute long discussions on whether she could eat two of the broccoli florets instead of all 3 since it looked like more than 1/4 cup, discussions on how many times she could walk to the playroom (she used to compulsively exercise so she is limited on that) and listening to her trying to play the games of changing her mind as to what flavor of pediasure she would drink in attempts to postpone drinking it. Sometimes she would get very emotional at mealtime and it would upset Jessica. I'm so glad that we were only there two days (one night) so that we could come home and not have Jess worry about her roommate. Jessica loves everyone and worries when she sees someone else having a hard time or being sad. While we were there I overheard this girl talking on the phone to her mom and wondered why the mom wasn't there. When we were packing, getting ready to leave, I saw the mom come in. I was really weird because just catching glimpses of her, I felt like giving her a hug. I felt a connection to her and she looked a little familiar but since the roommate insisted on keeping the fabric partition closed, I couldn't see her very well. As we were leaving, the mother said to me, "you don't remember me, do you?" I said that she looked very familiar but didn't know where I knew her from. Come to find out, she was the mother of the girl who planned and executed a special prom that Jessica went to a few years ago! This lady, we'll call her Ms. M, has a daughter who, if I remember correctly, had cancer and then decided to have a prom for teenagers who are battling serious illnesses. That was Jessica's one and only date she has ever been on! I have several pictures of the prom and will have to find them, scan them and then upload them here. Ms. M was there, helping her daughter with the prom and she was very taken with Jessica. She helped Jess pick out an outfit and some jewelry and she even painted Jessica's fingernails. Ms. M and I talked and we hit it off. Anyway, the one who organized the prom was Ms. M's older daughter, who is now in college. This young lady who was Jessica's roommate is her younger daughter. If I remember correctly, Ms. M's husband died of cancer, she had a bout with cancer and I believe her older daughter had cancer. Now her younger daughter has anorexia and will most likely have to be admitted to a facility... she is almost 16 and only weighs 79 lbs. I hope I'm not violating any HIPPA laws or any confidences but it is shocking to me that this disease could get so bad? I can see how this young lady would have a lot of stress with all that her family has gone through. Ms. M told me that her daughter came in with multi-organ failure from the disease. Apparently this isn't the girl's first hospitalization. Anyway, I'm just trying to wrap my head around this disease. There has got to be more to this girl's life than trying NOT to eat and trying to exercise to lose weight. Jessica tried talking to her several times about different things (she had to go through our side of the room to use the restroom and that's when Jess would attack talk to her. She only seemed interested in getting back to her bed and NOT talking to anyone. I felt bad because Jessica kept wanting to talk to her roommate... why not talk and try to make friends when you are both in the hospital. Don't get me wrong, this young lady wasn't rude or anything, but I could tell she wasn't interested in making friends. Ms. M gave me her phone number. I've been thinking about her a lot and will try to call her sometime. I tried to invite them to Jessica's birthday party but Ms. M said they couldn't come... it would just be too dangerous for her daughter.

You know, sometimes you do go home thankful for your own problems.

Blogging from the hospital

Here we are, hanging out at the hospital at almost 1:00am. Jess doesn't go to sleep until this time at home, why should things change for the better at the hospital?

Jess has been started on the Metaprolol today at about 2:00pm. The peds cardiologist said that if she gets two doses and does well then we could be on our way home tomorrow this afternoon by 5:00pm, just in time for rush hour. I had no idea that we could be going home this fast! I was preparing for at least 2 nights. Of course the PC qualified that statement with "IF she isn't wheezing at all by then."

Well, Jess normally has a breathing treatment at 9:30pm and the respiratory therapist said that she sounded fine when she came in to give it to her. At about 10:45pm Jess coughed kinda hard and said she needed another breathing treatment. I wondered if it were a ploy to stay up later since she asked for her gameboy right after asking for a breathing treatment. So while they called for the nurse to come listen to Jessica's lungs, I told Jess that she was NOT turning her gameboy back on since she doesn't want to turn it off once it's on at night. The nurse said she seemed to be ok but called the RT (respiratory therapist) to come and give a breathing treatment. Oh yeah, the doctor had to write for one more treatment since it wasn't written as PRN in the orders. So after the 2nd breathing treatment which took place around 11:45, the RT listened to her and said that she could hear a slight wheeze. I hope that was just a fluke or the RT didn't know what she was talking about.... except that Jess seemed to acknowledge her and not only know what she was talking about but said she could feel it a little. *sigh*

So just keep us in your thoughts and prayers. Pray for GOOD breathing and NO wheezing!

Jessica Graduates from High School!

Jessica graduated from High School! This was quite an emotional event for us. Our "Little Girl" graduated from High School! Jessica has been going to school in TUSD since she was 3 yrs old... almost 17 years! She has had her ups and downs medically over the years and has been in Special Ed this whole time. I thank the Special Ed teachers and aids SO MUCH! They have really contributed to how well Jessica has done academically and socially. She loves school, she loves to learn and she especially loves to socialize. Unfortunately the time has come where she is just not able to make it to school due to her medical problems. Her wonderful teachers offered to have a special graduation just for her so she could have that experience. (She is still welcome to come back to the class and visit any time she likes so it's not as if she won't be able to have that contact anymore.)

Jessica was so excited to be able to wear the cap and gown (she borrowed Justen's)! One of the teachers ordered a cake especially for her. The principle presented her with her diploma but he had to leave and it all happened while Karl went out to his vehicle to get his camera! So when Karl got back to the classroom, the teachers helped us do a much better presentation of her diploma and we got an excellent photo of her receiving it. She was also able to walk a few steps to receive it in front of the classroom whereas when the principle did it she was sitting in her wheelchair at the side of the room. The 2nd time was much better!

If you think about it, not many people would have believed that Jess would make it this far. She is amazing. God is amazing. We are truly thankful to have her in our lives still. And we are thankful to have friends and family like you in our lives as well.

Jessica receiving her diploma


Jessica said a few words... she said "I love you all".

Jess with Dad and Mom. Dad had to come while on duty, that's why he is in his uniform.

Barb, one of the teachers, got this cake made for Jess.

Jessica and Barb - we've known Barb since Jess was in kindergarten. Barb was a Teacher's Aid in Special Ed while Jess was in Elementary school for a few years. Later, when Jess started High School, we found that Barb had transfered to that Special Ed program and she has been with Jess for the last 5 years too! We just LOVE Barb!

Jessica received flowers from her former teachers Mrs. Bentley and Mrs. Palmer. (we didn't get a chance to get a picture of Mrs. Bentley with Jess but she was at the graduation)

Jessica with Mrs. Palmer - who was Jessica's teacher in kindergarten too. She transfered along with Barb to High School and was Jessica's teacher again for 4 years until she took a different job. She is also a very wonderful teacher and friend!

Justen and Ravyn came to the graduation


Jess and all her siblings... even her future sis-in-law!

Austin drew Jess a great dragon picture while at the party.

Jess with some of her classmates and Elaine, the health clerk.

Elaine, Grandma Jensen and Brandon hanging out at the graduation party.

Linda and Donna came to see Jess graduate. They were Jessica's hospice team when Jess was having lung bleeds and needed them. Now they come for social visits. They are great friends!

Jess and Amanda - our social worker and friend from " Tu Nidito".

Jess and Mrs Pankratz - Jessica's teacher from middle school. We still keep in touch with her. She was such a great help to Jess through the middle school years.

Scott, one of the Teacher's Aids, with Jess.

Jessica's whole class! Aren't they great?!


Thank you for stopping by. Leave your congrats messages please! It will really make Miss Jessica's day!

Digitek Recall

Digitek, a generic form of Digoxin (a very common heart medication) was recalled on April 25th, 2008. Here is the link to the recall:

I got an email on Monday, April 28th, about the recall from a member of an online support group for families and patients with CHD (congenital heart defects). This email group is called PDHeart and is a member of TCHIN (Congenital Heart Information Network). I checked and sure enough, the medication that was recalled was Jessica's medication. I called the pharmacy and they knew about the recall (apparently they had just heard about it). They said they would replace the Digitek with the brand name Digoxin. I called the PC (pediatric cardiologist) and told him that Jess had been feeling nauseated over the weekend. The PC had not heard of the recall but wanted Jess to have lab work done to see if her levels were high. He wanted me to hold her dig for the day just to make sure.

So I took Jess out Monday afternoon. She didn't want to go since she was feeling so tired but I dragged her out anyway. Don't forget that I have to load the wheelchair on the lift, take the oxygen tanks out, et. It's always a lot of work to take her out and I was tired from caring for her. So... there is a long wait, there are quite a few people there and Jess is miserable and wants to go home. Then Jess tells me that she needs to use the bathroom. Ok, where's the bathroom? The lab had just moved into a new location and I start looking around. I could see through the window that goes into the reception office and behind there was a wheelchair bathroom. Nobody was in the reception area so I figured I would just open the door that leads back there and take Jess to the bathroom. Well... the door is locked! I could hear a baby crying and knew that the bloodsucker phlebotomist probably needed help from the other person who was working there. I was having flashbacks of all the blood draws Jess had as an infant through childhood and having to hold her down while she screamed and kicked, scratched and bit squirmed. Sometimes we needed multiple people to hold her down. Sometimes the veins wouldn't cooperate so it took multiple sticks and fishing around. :( I'm soooooooo glad we are past that - past having to hold her down and her screaming anyway! We waited and waited. I stayed right there at the window trying to catch a glimpse of anyone to let us in so Jess could use the bathroom. She was really uncomfortable sitting in her wheelchair and worrying that she might have an accident. ggggrrrr!!! Finally one lady came into the room and I immediately told her that Jess had been waiting to use the bathroom and couldn't wait any longer! So she rushed to let us in. Apparently someone had called in sick and she had to help with the child getting his blood drawn. Yup... I knew it. At least once Jess was done in the bathroom they took her right back to get her blood and we were outta there!

On an interesting note, I got a message on my answering machine the next morning saying that they lost Jessica's blood and we needed to go back for another stick. They sounded really apologetic. I started to get ticked off and then the very next message was that they found it - it has already been sent out to the lab it needed to go to and that her blood was safe and labeled properly.

I didn't get a call from the PC that day so I held her dig again. Jess was feeling better and I was glad. The next day which was Tuesday, I called the PC and he didn't have the results yet so I had to give the information as to where and when we did the blood work so the secretary could find it. I eventually got a call telling me that Jessica's dig level is normal. Jessica had her usual dose on Sunday around noon, missed Monday's dose and got the blood draw Monday evening (almost 6:00pm). It is possible that her levels were a little high over the weekend and caused her to feel sickly or maybe she just was fighting a bug. The PC told me that she is on kind of a low dose so it could have worked up to a high blood level over time. She had been taking the recalled drug for more than a week. The main thing is that she is OK, I got the new digoxin and she is back on her regular level.

Here is what really caught my eye in the recall:

"The voluntary all lot recall is due to the possibility that tablets with double the appropriate thickness may have been commercially released. These tablets may contain twice the approved level of active ingredient than it appropriate.

Digitek® is used to treat heart failure and abnormal heart rhythms. The existence of double strength tablets poses a risk of digitalis toxicity in patients with renal failure. Digitalis toxicity can cause nausea, vomiting, dizziness, low blood pressure, cardiac instability and bradycardia. Death can also result from excessive Digitalis intake. Several reports of illnesses and injuries have been received."

Here is a picture of the Digitek (which was recalled) and Digoxin. It's not the best picture but you can see that one is thicker and a little wider than the other. Can you pick which one was recalled?


What is amazing to me is that it hasn't been on the news, in the newspaper or had any publicity at all! I've heard of several members of the online support group who's pharmacies are giving them a hard time about the recall and won't replace the medication!! This is a very commonly used drug. Jessica has been on it her whole life! The recall admits that they have had injuries occur with the drug mistake and yet some pharmacies are not going to replace the medications? CHILDREN take this medication and are affected by this recall if they are old enough to swallow pills.

My next-door neighbor is encouraging me to call the local news about it. I'm not sure if I will but we'll see. I've been extremely busy with trying to get this medication/recall straightened out, blood work done and getting Jessica's graduation organized. Then we had the graduation Thursday and a party here at our house on Friday. I slept part of today ... until Karl woke me up telling me that Justen was in a car accident! Yeah, he's OK. The other people are OK too (except the mother in the car is a B - och) Our pick-up has seen better days but at least it is drivable. That's a whole other story but it's been quite a busy/emotional week. I'll be posting pictures of Jessica's graduation in my next post.

If you know anyone who has a heart condition and may be using Digitek, please let them know about the recall. You could save their life!

*

More Tears

Miss Jess had a very hard night last night. She got very discouraged and started crying. She feels left out. She knows that most girls her age have boyfriends or at least date. She is jealous that Justen is getting married and wishes that she could have that kind of relationship. She is at the level of a 7 yr old in so many ways but has the hormones of a teenager. She also has some very righteous desires such as being married and having a family. Last night she let a lot of her anguish out. She said things like, "What if I never get married? Doesn't Heavenly Father know that I want someone to love me?" {insert me fighting back my own tears and a huge lump in my throat} I told her that of course Heavenly Father knows the desires of her heart. I told her that she will have a chance to get married whether it's in this life or the next. She said, "I want it to be in THIS life!" More tears. I'm thinking that it may be time for her to get a Patriarchal Blessing so she can hear of the many blessings that the Lord has in store for her.

Needless to say, it breaks my heart that she feels so left out. I know that her quality of life isn't what it used to be. She doesn't have the strength or stamina that she used to. And to think I used to feel bad of all the things she was missing out on back then.... and now she can't do most of the things she used to. She said that the young women don't understand what it feels like but then hugged me and said, "But you do!" I reminded her that she always has me to be by her side. We hugged, cried a little and then I said or did something silly and we changed the subject. I finally got her settled into bed, with 4 barbies. LOL Of course she played with them for a little while and then got up to go to the bathroom. What can I say? It was one of those nights where I knew she needed the Barbies to comfort her. She keeps telling me that she likes to play with her Barbies because it's like she gets to pretend to be married and have children - just in case she doesn't get to in this life. *sigh* I wish it didn't have to be so hard for her.

[For those of you who don't understand what I meant about the next life, we believe in the literal resurrection of all living beings but no, we don't believe in reincarnation. For more details please visit: LDS.org or click here for the topic of "resurrection of all living beings".]

Cancer Strikes Again

I'm sure that most of you know that my sister's son, Marcus, is battling brain cancer. He is hanging in there and is such a fighter. He is having some side effects from where the brain tumor was. He is having a lot of emotional problems. He is now seeing a therapist and hopefully his outbursts will subside. My sister, Karen, has a blog called "I Made It Through Another Day". Feel free to stop on by her blog and say "HI!" Karen's MIL (husband's mother) was just recently diagnosed with cancer. I don't know exactly what type of cancer but John (my sister's husband) must be having a hard time. Both his son and his mother are battling cancer.

The most recent family member to be diagnosed with cancer is my niece, Ruth Ann. She is my older brother's daughter and is almost 21 yrs old. She was diagnosed with cervical cancer. She got married about 1 1/2 years ago. Her and her husband live with her family and I'm so glad that she has such great support. She is going to go to the Huntsman cancer center. At first everyone was really freaking out because the lab called and told them that she had cervical cancer stage 3!!! That would mean that the cancer has progressed quite far. We just couldn't believe it but apparently someone mis-spoke and she has cervical cancer TYPE 3, Stage 0!! Wow, what good news! It looks like they caught it early. What a blessing in disguise, huh? After that horrible scare, we are all relieved that it is in the early stages. Hopefully she will get the best care and beat this thing.

I wish she could come and visit before she has to start treatments. We couldn't attend her wedding because Miss Jess can't travel and is not doing very well. I don't dare leave her, in fact, I feel so crummy most of the time that I couldn't even imagine traveling. My brother Brian (Ruth's dad) is coming to visit next week. He is bringing two of his daughters, his youngest son and a granddaughter who we have never met. He had planned this trip awhile back and put it on hold as soon as Ruth was diagnosed with cancer. Now that everything is set up for her to get her treatment, he is going to come after all! We are planning on having everyone come her next Friday for dinner. Like I said, I wish that Ruth and Garrett (her husband) could come too.

If you wouldn't mind keeping Ruth Ann in your prayers along with Jessica and Marcus, (and my sister's MIL, Rebekah) I would really appreciate it.

What a PAIN!

Miss Jess is having a lot of tummy pain. She was doubled over in pain last Saturday night and only slept off and on most of the night so I stayed up with her. Morphine seemed to help some but not much. She got two extra doses of morphine that night so that says a lot as to how bad her pain was. Sunday wasn't much better but she was able to eat a couple of popcicles. Monday and Tuesday were slightly better with just a bite of food here and there. By Tuesday night she ate 1/2 bagel with cream cheese so that was an improvement. She is slowly starting to eat a little more so I am hopeful that the worst is behind us. That is for now.

Here's a few things that we know about Miss Jessica's tummy problems (which have been going on for YEARS):

1) She has gastritis and "ulcerations everywhere"... we discovered this during an endoscopy just over a year ago (Dec of 06).

2) The causes of her gastritis is a combination of taking a boat-load of multiple medications and lack of oxygen.

3) There is no cure for her lack of oxygen (which will continue to get worse as her health deteriorates) and she needs every single medication she is on.

4) Jess takes twice the Prevacid as the usual prescribed dosage for adults. Prevacid helps keep the acid levels down in the stomach.

5) She takes Carafate 3 times a day. Carafate must be taken on an empty stomach. It rules our lives. Seriously. Jess takes one tablet (which must be swallowed quickly or it would "explode" in the mouth and make one gag and throw it up. It tastes very chalky. Trust me. We know this from experience. Too many times. Then Jess has to wait one hour before eating anything. Finally after eating a meal (or snack as her tummy hasn't ever liked to eat very much all at once) then we have to remember what time she has stopped eating and then take another Carafate 2 hours later. So two hours after stopping eating a Carafate is taken then she has to wait one more hour before she can eat again. Then stop eating. Then two hours later take a Carafate. Then wait one more hour before eating. We have to do this all day long, every single day. It's hard to make Jess eat enough when it's time to eat so that she doesn't get too hungry before being able to eat again yet her tummy can't take too much at once or she throws up. Carafate coats the stomach and helps heal the ulcers and calm the gastritis.

6) Jess has very sluggish bowels. This is also due to lack of oxygen. For many years now she has struggled with constipation and several years ago she was started on Miralax. "Miralax is a polyethylene glycol powder which dissolves in water. This material is not absorbed from the intestinal tract. It stays within the gut and acts to pull water into the intestine thereby increasing the volume and frequency of bowel movements." The site recommends to not be taken for over 2 weeks (of course unless directed so by a physician) . Due to Jessica's chronic lack of oxygen, she needs Miralax long term. In fact, she now takes up to twice the amount that is usually prescribed to most adults. I usually help Jess in the bathroom so I know whether she needs more Miralax or less on a daily basis and the GI doctor has told me that I am doing a really good job! Not the funnest job in the world but I love my daughter so I do what I need to.

7) Jessica's GI doctor decided to put her on Xifaxan within the last 6 months. Xifaxan is an antibiotic that fights bacterial infection only in the intestines. In many cases bacteria can over-grow and cause painful gas. Jessica's tummy has been somewhat distended and a sonogram was done to see if there was fluid build-up. There was no fluid so we were told that it is gas. Yes, Jess has a lot of gas so she was put on Xifaxan. It is given for a two week period and then sometimes has to be repeated in 2 or 3 months. Well, Miss Jess has to do things her own way.... and she seems to need it constantly. She has more pain within 2 or 3 days after a 2-week treatment so I usually have to refill the prescription right away. Since the medication is not absorbed into the bloodstream the GI doctor has told me that it's ok for her to take it all the time if needed.

Jessica has still been having some stomach pain but not extreme. We saw the GI doctor on March 20th. He examined her and said that her stomach was still somewhat distended and Jess told him that she still has some tummy pains. He wanted to start her on a tiny dosage of Erythromycin to help empty her bowels. I knew that Erythromycin could cause stomach pains and diarrhea so I was concerned about her taking it. I was reassured that since Jess would be taking it in such a minimal dosage - 100mg once/day vs the usual 500mg twice/day, then that should not be a problem - and if it was then I could stop the medication. The main thing the GI doctor was worried about was if it would interfere with any of the heart medications. So I was given a prescription and told to hold on to it until the GI doctor could get in contact with the Peds Cardiologist.

I took Jessica to see the pediatric cardiologist (PC) the very next week, March 27. We just happened to have an appointment for that day. Apparently Erythromycin can cause arrythmias! I had no idea that could be a side effect! Since Jess is still having around 10,000 PVCs daily we sure didn't want to increase that! The PC wanted us to do an EKG that very day before starting the Erythromycin to get a baseline of what hers looks like and then we were to go back the following Tuesday for another EKG to see if it had changed. The PC didn't think that anything would change considering the tiny amount that she would be taking.

I was still very skeptical about starting the medication but figured that Jess deals with so much pain every day she deserves to try this in hopes of diminishing her tummy pain. Jess took one dose of Erythromycin Thurday night and another one Friday night. By Saturday morning she was complaining of more tummy pains and by that evening she was practically doubled over in pain. I told her that there was no way she would take that medicine again. Of course part of me wanted to think that maybe she had caught a stomach bug but that isn't the case. As I mentioned at the beginning of the post, she was in so much pain that she hardly slept Saturday night. It's now a week later and she is still having a lot of tummy pain. I am so upset that I agreed to let her take the Erythromycin. She hasn't been in this much pain in several months. I know that there was no way to be certain whether that small dose would help or hinder but I truly had no idea it would last this long.

Today (it's still Thursday in my head since I haven't gone to bed yet)... anyway, today we were invited to go to lunch with our friend Susan from our support group, Tu Nidito. Jessica hasn't gone anywhere fun since.... well, hardly ever all winter! So we planned our little outing. Jess was so excited that she woke up at 8am. We were supposed to go to her favorite restaurant, IHOP, at noon. I told her to go back to bed and get some sleep since she didn't get to bed until after 1am. Well, she went back to bed but kept getting up.... so when I finally got up to have my shower I told her that I would be in to help her get ready to go as soon as I was done. Justen was home so I asked him if he would be willing to load the wheelchair onto the lift for me and he said yes. The silly girl was SOUND ASLEEP when I got out of my shower. I tried several times to wake her up and she was too tired! What a goof! I called Susan and she recommended that we reschedule for another day but I knew that Jess would be upset if we didn't go today so I asked Susan for a little more time to get her up and take her to lunch. I finally did get her awake and she was so glad to be able to leave the house and go somewhere fun. She wasn't able to eat much at all because of her tummy ache so we brought her food home. Later this evening she was able to eat 2 pieces of her chicken strips and a little bit of fruit. She kept saying that she was so happy that she got to go have lunch with me and Susan and she didn't even let her tummy aches get her down.

It breaks my heart to see her in so much pain. I've been doing a lot of wondering WHY. She has already been through so much, WHY does she have to go through more pain? Over the years I've had so many people (some family members included) tell me "It's in the Lord's hands so don't worry", "You know she will go to a better place", "You need to accept it and move on"... etc. I KNOW it's in God's hands but sometimes I wonder why His Hands don't comfort her and take the pain away. I KNOW that heaven is a better place but the selfish part of me wants her to experience comfort and peace HERE. I KNOW that I have accepted being a mom to a (pick your term) chronically ill, disabled, developmentally delayed, medically fragile, terminally ill child but how do I move on when her health is slipping backwards? She knows that girls her age are graduating from high school, going away to college, getting jobs, getting married.... but at the mental age of about 7 she doesn't understand that she can't just choose some guy to marry and get married. She doesn't understand the responsibilities of being an adult, living out on your own, being married and how to maintain such a relationship. Heck... my oldest son is barely learning about all that and how hard it is to be a responsible adult. (this could be a whole new post!)

I've been having a difficult time lately. Many emotions going on inside of me. Too much stress. So much worry. BUT I have made sure that I enjoy the little things. I laughed out loud at the fact that my "little girl" was so excited to go out to lunch that she couldn't sleep in but then fell asleep at the last minute and almost missed going out. I love her stories she makes up and writes down in her books. It's very interesting to try to make sense of those words and the lack of sentence structures and very little punctuation. I probably use way too many run-on sentences but this girl can go two.... maybe even three pages before inserting a period or exclamation point. LOL! I've been enjoying Brandon being the comedian that he is and Austin growing up and trying new things. Justen has been opening up to me more as he tires to prepare for his future and his wedding. Karl and I have tried to go out a few times and we are soooooo grateful for our relationship. So don't think that all is doom and gloom here... but it is so hard to watch my only daughter slowly deteriorate and know that she is dying. I look at her laying on her hospital bed sometimes and imagine what it will be like when that bed is gone. Today as I stood in her doorway and she was talking to me I looked up at her shelf which holds a ton of stuffed animals and wondered to myself if the people who gave those to her will want them back as a momento of their love for her? My nephew is battling a brain tumor and one of my nieces just found out that she has cervical cancer. Is it right for me to hope that IF either of them dies from their cancers that it happens after my daughter is gone so that I can travel to go comfort my siblings? How many people think about these things? How many people have reason to? Probably more than I know. Probably way too many people... who all feel alone in their feelings too.

Now you know why I haven't updated in awhile. There is so much going on that it takes me 1/2 the night to write it. If I try to write during the day then Miss Jess interrupts me 20495838472 times and it doesn't come together. LOL

I have some fun Easter pictures that I will try to upload soon. We went to the Jensen Grandparent's house and enjoyed our visit with them. If I don't then upload the photos and post about Easter then please remind me to! Like I said, it's not ALL sad/hard/difficult/painful. I want to post about the fun stuff too.

Thanks for reading and thanks for caring.