Wednesday, December 30, 2009

Wednesday December 30, 2009

I have to say, the past couple of days have been wonderful. How grateful I am that my dear mother and sister were able to come stay with us. I feel like I have been on a mini vacation. Jason and I have had several opportunities to run errands together. We were able to go out to lunch yesterday. It was so nice to spend some time alone. We haven't had that opportunity for a very long time. I was grateful Ashley felt comfortable enough to stay with mom and Tammy. She won't do that with just anyone. I have had other kind people who have offered to stay with her while I ran to the store. But with how sick Ashley is, she upsets easily when she isn't with someone she feels comfortable with. She cries at the drop of a pin and understandably so. I have to say, it felt good to be able to leave the house with Jason and not worry if she was crying. I had forgotten just how amazing it is to be with Jason, and laugh and not be worrying. It was a blast for us.

As for my dear angel, she has remained the same. Her feet are still horribly swollen. Her legs are swollen, as is her abdomen. For some reason, today her arm, the right arm to be exact, was also distended and sore. I really thought we were gaining ground with the right arm and the clot. Today, it didn't appear we got anywhere. She woke up in the night last night complaining it hurt really badly. When I offered her medicine, she declined. She told me she wanted to change sleeping positions and go back to sleep. We shuffled her pillow mound a bit, and thankfully, she was able to sleep again. Today she did take some pain medication, and it took the edge off a bit. I will ask Nancy tomorrow what she thinks about the increase of swelling in that arm. Not that we will change anything, but just for informational purposes.

Ashley's breathing has been good over the past couple of days. Even with the fluid retention, she isn't working to breathe. I feel the increase in her lasix has, for now, helped control the shortness of breath. We still have some room to move on her lasix dose. Right now, she takes 15 mg in the morning, 20 mg in the afternoon, and 15 mg at bedtime. We can go as high as 30 mg three times a day. I do hope we don't ever have to give her that much medicine. That scares me to death! Who knows what her potassium levels would do then, even with high doses of aldactone?

Ashley's emotional state hasn't been good. We have seen her smile only briefly. I know she suffers so much! She asked me last night when we will cut her Sotalol. Sotalol helps control arrythmias. That is the whole reason she takes it. Because of the high dose she is on, we can't cut it quickly. It has to be done slowly, over the course of a few weeks, from what I understand. I spoke to Dr. Etheridge about it a couple of days ago, and starting next Monday, we will cut the morning dose for a week, and then cut the morning dose again for another week. Then we will focus on cutting the evening dose, etc. Ashley wants to start weaning now, but Dr. Etheridge wanted to wait a week to let her body get accustomed to the lack of metoporal. I pray she can be patient. I know she wants to be done with this broken body. She is so miserable!! Even Mom and Tammy saw how unhappy she is. She did ask me if there was a chance, even after omitting sotalol, she could still stay like she is and not die. I admitted to her there is always that chance. Heavenly Father has an appointed time for her to go, and she won't go until He is ready for her to return to Him. I do know, if she remains with us for a time, He will bless her to carry these heavy burdens. She will not be left alone. We will all have the strength to keep her going, to comfort her, and strengthen her. When you think you can't take another step, you can't face another problem, you can't go one more day, that is when the angels come to bear you up. They come in so many forms. This week our angels came in the form of dear friends, (the Badger family whom we love with all our hearts), and my wonderful mother and sister, who enabled Jason and I, and the boys, to feel normal for a bit. These days, nothing is ever normal, but just for a little while, we were able to rest a bit from the cares of the world. Now we are all refreshed and ready to face another week. I am so proud of our sons. They have been patient and loving and kind. We still have our moments of contention, but they have been angels too. So many blessings!! I am so grateful for the love and prayers of so many!! (0: I am grateful for the angels.

Monday, December 28, 2009

Monday December 28, 2009

Last night was really rough. Ashley was very sick. She was horribly swollen all over her body and struggling to breathe. On top of all her aches and pains, she was upset, and she didn't know what was wrong. Every little thing made her cry. She and I tried to play a couple of games together, and it was hard to do that. She got upset over the smallest things, and then she would apologize over and over for crying. I tried to explain to her that it wasn't her fault she was having a hard time controlling her emotions. She had earned the right to cry all she wanted! I assured her it was good and healthy for her to get her frustrations out. She felt awful all day yesterday. I had given her several doses of morphine and ativan through the course of the day to help her respitory distress. Ativan definitely helps control her anxiety in those moments when she can't breathe, but I think it makes her more emotional. It is hard to tell. She is getting sicker, and with how awful she feels every day, I am sure that contributes to her sadness.

With how upset Ashley was, she needed some distractions to help her relax. We tried walking around the house. That failed miserably. She was too weak and short of breath to enjoy that. We tried playing games. As I mentioned earlier, that failed also. We tried watching movies. That helped a little bit, but it was hard for her to decide what she wanted to watch and she got upset that she couldn't pick. In the end, that didn't help either. The thing that finally helped a little bit was looking at various Nintendo DS games online. She decided she wanted to trade in a couple of her games that are too hard for her to play. We stayed up until after 2:00. She woke up three times after that. At 5:00 a.m., she woke me up and was really working to breathe. I gave her another dose of morphine and ativan. She finally fell back to sleep, but it took a while. Like I said, it was a very rough night. Thankfully, Jason was able to stay home for a little while this morning. Ashley and I slept in for a little bit, and he took care of the boys. I was glad to get a little rest. And I was so thankful Ashley was able to sleep in for a while. She was so exhausted! And I knew we had friends driving up from Burley today to come see her. I wanted her to be as good as she could be.

Nancy came mid-morning. She was really concerned about the swelling, and how hard, even at rest, Ashley was working to breathe. I was too. We spoke to Dr. Etheridge about what was going on. She wants to increase Ashley's lasix. We aren't going to wean Ashley's sotalol this week. Dr. Etheridge felt with the new symptoms occurring, it would be best to wait a few more days before we pull another med that might cause more chaos in Ashley's body. I was worried Ashley might get upset to find out we couldn't wean her as quickly as she hoped they would, but she was okay with the explanation.

Ashley was able to visit with her best friend Kiara for a while this afternoon. They played with their DS's and had a great time. It was so nice Kiara and her family were able to come. After Kiara and her mom and brother left, Ashley was exhausted. I had to help her into bed. She needed more medicine by then. Her whole body was hurting and she couldn't breathe. She was emotional all over again. Fortunately, my mom and sister arrived in the nick of time. They ran interference with the boys while I helped Ashley take a bath and crawl back into bed. She was able to sleep for a while. Thankfully her rest was enough to take the edge off of her aches and pains and extreme fatigue.

Tonight she has been in bed all evening long. She is too tired to do anything but lay. Her legs are still really swollen, as is her belly. I am just praying she will be able to have a decent night. She desperately needs sleep. If she can't sleep tonight, I am going to ask Jason to give her a blessing. I wanted her to have one last night, but she didn't want one. I knew it would help her, but it has to be her choice to ask for a blessing. We will pray for a good night.

I had to interject here about the morphine. As I mentioned in a previous blog, she wasn't tolerating the morphine. It made her very ill. Miraculously, and not by accident I know, her body has been able to tolerate the morphine over the past few days. I have no idea why. Nancy has no idea why. Dr. Etheridge has no idea why. I know it is a direct blessing from Heavenly Father. Morphine works well, in combination with ativan, to control respitory distress. There isn't much better, not for Ashley. The two drugs combined help her to relax and breathe better. I am so thankful she is blessed to be able to have the morphine. I don't know what we would do without it. I know Heavenly Father is watching over her.

Sunday December 27, 2009

Super fast entry tonight. Ashley has had an absolutely horrible evening. Earlier today, she was really working to breathe. I gave her a big dose of morphine and ativan before I left for church, hoping she would be alright. It was super hard to go to church. I worried about her the whole time I was gone. I knew she was upset when I left, and when I arrived home, thankfully she had fallen asleep. When she woke up, she cried and cried and cried. Her body felt weak, and her breathing was still difficult. I couldn't give her any more morphine at that point. It was too early, so I sat with her and rubbed her back and talked to her, trying to calm her down. At 7:30, she was desperate for more medication, so I gave her another dose. It helped a little bit, but she has just been a mess all night long. She is afraid to go to sleep for fear she won't wake up. She keeps having these episodes when she is sleeping where she feels like her heart has stopped and she can't breathe, but she can't wake up. That has made it hard to sleep too. We have family and friends coming tomorrow and she cried about that. She doesn't have the strength to deal with anyone. But she doesn't want to cause any pain either. We agreed on a few guidelines so she can tolerate the wonderful people who want to see her over the next few days.

I can't write more now. She is so upset tonight and she needs me. More to come........

Saturday, December 26, 2009

Saturday December 26, 2009

Today was a much better day. I woke up in the night last night, and could not fall back to sleep. So I sat in bed a prayed for a very long time. I prayed for Ashley. I prayed for Jason. I prayed for peace. I prayed for strength. I felt so horrible all day yesterday, it was hard to see any silver linings.

When I woke up this morning, I had a thought come into my mind. Faith and fear cannot co-exist at the same time. If you truly have faith, you don't fear. You keep moving forward, head held high, confident that Heavenly Father will lead you and help you. I realized I don't have faith. I have fear. I fear what will happen to Ashley. I fear what my stupid body will do as things get more stressful. I fear what life will be like for everyone once she is gone. I can't think like that. That isn't what Heavenly Father would want me to be doing. I know there is a plan for Ashley. I know she has been promised she will not suffer more than is necessary. I know she has been promised that with the help of the Holy Ghost, her burdens, though heavy and cumbersome, will be made light, that she can bear them. I know she has been promised, when the time comes for her to pass on, the angels will come. Her death won't be scary. She will be surrounded by those who love her, and will be taken back to her Heavenly Father by them. So now, I have to stop fearing and start trusting, truly exercising faith in Him. I have to trust in the Savior, Jesus Christ. He knows everything I am feeling. He knows how to comfort not only me, but my angel and my dear husband, who also suffers so much in silence.

I have to say, when I awoke this morning, my heart felt so much lighter. I felt peace. And you know what? Today has been one of the best days we have had with Ashley in a long time. She was still tired, but she had the energy to visit with her wonderful grandpa and also her dear grandma, whom she loves so much. She hasn't had any arrythmias. She ate three times today. Her swelling, while concerning, didn't bother her as much. It was literally like her burdens were lifted from her today. She was able to have peace. She was able to smile and laugh. I know Heavenly Father heard my pleading cries in the night last night. And he answered. He gave us this day to rest all of our souls. I know it.

This morning was hard for me because today was the day to stop the metoporal. I cried this morning when I didn't pull up her usual morning dose. Fortunately, because my in-laws were here, I was able to escape to the store for a little while. I was able to go see Jason for a bit, and take him lunch. While I was there, I cried and cried and cried. I cried on Jason. I cried on his mom. It felt so good to get it all out, to cry freely where I knew Ashley would not see me so upset. I came home refreshed and renewed and composed. I was able to put a smile on my face even though my heart was aching.

I want you all to know, I am not going to fear anymore. I know God loves all of us. He helps us take another step, when we think our feet will never move again. He lifts those burdens that threaten to smash our hearts to pieces. Just when we think we can't handle one more thing, he sends us those glorious moments of peace, where we can temporarily rest from our troubles. Today we had that miracle. And a miracle it was.

Thank you all for blessing our family so much!! We couldn't make it without our dear family and friends!! (0: Keep up the faith! Keep moving forward!

Friday, December 25, 2009

Friday December 25, 2009

The past couple of days have literally flown by. I can't believe it is already Christmas night. Before we know it, it will be New Year's Eve. Time flies when you are having fun.

I am very pleased to report our angel has faired well. While not feeling good by any means, she has not had any more episodes like she had the other night. Today she felt good enough to get up with her brothers and open the "Santa" presents. She stayed in the living room for about 15 minutes before going back to bed. We were up late last night, so it was no surprise she wanted to rest. I hated to wake her up, but she did not want to miss the early morning opening of the gifts. I promised her when she fell asleep last night, I would wake her up with her brothers.

After the first round of gifts, we ate breakfast and then headed back to tackle the tree presents. Ashley again came back out to be with us. I was so glad she felt good enough to join in. I have to relate a really heart touching thing that happened after we finished our tree presents. Ashley got a Build a Bear kit from the hospice workers. She was thrilled about it and opened it up to start putting it together. The bear she was building had to be sewn around the edges. She sat on the floor for almost half an hour working in that bear. I was in the kitchen working on the never-ending dishes, (ha ha ha), when I noticed she was laying on the floor. She got so tired, she simply tipped over on the floor and went to sleep, sewing needle still in hand. I just wanted to cry for her!! We tried to move her into the bedroom, but she woke up and started crying. She thought she ruined her bear forever. I have no idea why she thought that. I sat with her and read through the instructions. She hasn't messed anything up. It took me a while to convince her of that.

This afternoon, we encouraged Ashley to rest as much as possible. It was difficult with the boys running through the house like wild monkeys, but we did our best to keep them sort of under control. Grandpa and Grandma Winn, as well as Ashley's aunt and uncle, Geni and Nick, were coming all the way from Wyoming to see her, and we wanted her to save her energy for them. She was so thrilled to see Grandpa and Grandma. She loves her Grandpa Winn. By the time they arrived, she had rested enough she was able to come into the living room and open the gifts they brought. She visited a little bit, and then went back to bed. Her wonderful Grandpa, and Grandma too, came into the bedroom and spent the evening just sitting by her side. I am so glad they were able to be here. I was worried if they weren't able to come, they would not get to see Ashley before she dies. She is so ready to go. Tomorrow is the day we stop her metoporal, and no one knows how long she will live once we stop that medication. She is already having more arrythmias. Metoporal helps control those arrythmias. Of course, nothing with Ashley is predictable. But she is ready to be done with everything.

For me, this day has been super difficult. I have been emotional since we had our Christmas program last night. I was hoping I would feel a little better today, but I didn't. My heart felt so heavy. It was like a big weight was on my chest all day. As I watched Ashley struggle, as I looked at her swollen, broken body, as I dried her tears, part of me wished for her suffering to end. The other part can't let go. The other part is grieving to the depth of my soul. I don't know what to wish for. I don't know what to pray for. It crushed my heart to know this is our last Christmas with our angel. I just wanted to curl up in a little ball and cry until I have no tears left. I would have done that. But I knew how upset Ashley would be to see me cry so intensely. She is so sensitive to my feelings. The minute I am upset, she blames herself. I don't want that. I can't add to her already unbearable burdens. It is so difficult to find a balance. I feel so out of balance right now. I can't focus. I can't sleep. I feel sick. I feel sad. I know there is light at the end of the tunnel. Right now, it is hard to see the light. I am so scared this week is going to be even harder than the last and I don't know if I am up to the task. And I have to be. Here is where faith comes into play. I know the only way I am going to get through this, the only way Ashley will get through this, is if we have faith. We have to dig deeper than we have ever dug before. We have to reach harder than we have reached before, to our wonderful Father in Heaven, to His Son, Jesus Christ, who can see what we can't. I can't do this alone. There is no way. I don't have the strength. I will crash and burn. Please keep praying for all of us. We need it. Oh how we need it!!

Wednesday, December 23, 2009

Wednesday December 23, 2009

Last night was a very scary night for our angel. About 9:15, I was in the living room, vaccuuming, and Ashley came out crying. She said she couldn't breathe. I could tell she was struggling. Her lips were blue. She was retracting really badly. She was upset enough, she wanted ativan and morphine. I did give her a little morphine last night, only because she was struggling so much. It was such a small dose, it didn't upset her stomach at all. Thank goodness!! The combination of the two drugs, along with a bit hit of oxygen, calmed her down a bit. Her heart was beating wildly. That is the only word I can think of to describe what it felt like. Her whole body shook with every beat. It was absolutely scary! The episode lasted for over an hour and a half. By that point, she was exhausted. I was so afraid she was going to pass away. I prayed so hard that whatever might happen, that if she did go, it wouldn't be awful. I prayed for strength to accept the Lord's will for her. I prayed that she wouldn't have to suffer horribly, no matter what happened. I prayed long into the night. As you would expect, I didn't sleep much at all. Every hour of so, I would wake and reach out to touch her arm to see if she was breathing still. I was so grateful when the sun came up this morning and she was still with us.

The episode last night took its toll on her. She was super weak this morning. Her color was bad. Her entire body was swollen. Her feet were especially large. She didn't have any appetite, but she got up long enough to take her medicines, and then she went back to bed and slept off and on all morning. I would periodically come in to look at her. Once I felt her heart beating. I could see her body shaking, like it was last night. Sure enough, her heart was wild again. It stayed like that throughout the afternoon. I felt the palpitations were a huge cause of her extreme fatigue. Ashley herself was really discouraged with how awful she was feeling. We talked a couple of times about how these symptoms are expected. It is part of the process she will go through as her poor broken heart continues to fail. She wasn't upset about it. She accepted it, and made sure both Jason and I knew no matter what happened to her, she did NOT want to go to the hospital. No matter how her heart was beating or how hard it was for her to breathe, she pleaded with me to keep her home. I assured her many times, we would always keep her home. Her wished are of the utmost importance to us. We would never do anything contrary to her desires. I really feel the empowerment we are giving to her, helps her deal with this process better. She knows what will happen to her in every situation. She knows she will always be at home, surrounded by family who love her dearly. And with that knowledge securely locked in her heart, she can be at peace with her decisions.

This evening, she once again had another episode of irregular heartbeats. This time, the heart wasn't racing and beating wildly, but pausing, then beating, then pausing. She was struggling to breathe, and once again, I gave her ativan and a small dose of morphine. She was working enough, she even electively wore her oxygen for a little while. It wasn't long, but long enough to give her a little boost. While Jason took care of our rowdy boys, I fixed her bed, and created her pillow mound. I need to take a picture of all the pillows she uses at night. She has to be fairly upright, or she cannot breathe. We have taken all the spare pillows in the house, as well as a couple we bought for her, to create her special mound as we call it. Thankfully, it works. She does have a hospital bed, with a thick memory foam mattress on it, but she never sleeps in it now. She sleeps in our big bed with me at night. I wouldn't want her far away. She needs help in the night, and I wouldn't hear her in her room. I am thankful Jason is such a compassionate dad and happily sacrifices to let her sleep in our bed every night. It means he and I don't get to sleep together, which is a major bummer. But it won't be forever. Right now, she is where she needs to be. We both know that. And for now, it is okay.

I would be so ungrateful if I didn't express deep gratitude to all the angels and elves who blessed our family today with gifts and money and food. We have literally been showered with blessings today. I must admit, right now, I am physically spent. My body doesn't feel well. I am always tired. It is so hard to face shopping and Christmas, which in itself, is stressful. Our financial situation isn't good. We get by, but there is not much left over after bills are paid. Honestly, without the generosity of others, Christmas this year would have been meager. But because of the loving kindness of many people, our children are going to have a wonderful Christmas. We have lots of food, and I don't have to go shopping tomorrow. YEA!! It feels like a big burden has been lifted off my shoulders. That is my main beef with Christmas. Every year, at Christmas, I get stressed. I stress over what gifts to buy and make for family and friends. I stress over huge crowds, long lines, busy stores. I stress over lots of things that are absolutely unimportant and trivial. It ruins Christmas for me every year. My cursed anxiety flairs up and then I end up feeling sick the entire Christmas break. Never fail, most Christmases are like that for me. I know it is wrong. This year, I was determined to keep the true spirit of Christmas in my heart. I was determined not to worry so much about everything. I knew this would be the last Christmas with Ashley, and I wanted it to be the best one ever! Then I found out Santa's helpers were helping us with our Christmas. It was an answer to my prayers. Jason and I were able to get a few gifts for our kids. We went out shopping three times and were finished with all our Christmas shopping. It was so easy! (0: I can now sit back and relax and truly enjoy this beautiful time of year. Even with the stress of Ashley's passing weighing heavily on my mind, for once, I have peace. I pray for everyone that all may be filled with the spirit of Christ, and never, ever forget, how important, how miraculous, how marvelous the birth of Christ truly was, and what it means for us. Thank you all for lifting our burdens. I need that. We all need that. I won't survive without help. I can't tell you how much we love and appreciate everyone who has given so much to our family!!! (0:

Tuesday, December 22, 2009

Tuesday December 22, 2009

Today was Jason and I's 14th anniversary. Jason was able to stay home all day long. I loved having him home. We had a beautiful day as a family.

Ashley has been doing alright today. Her arm was a little more swollen when she got up this morning, but she hasn't been in pain today. I went to the pharmacy and picked up her Flagil so we have restarted that medication. Her stomach was lots better tonight. Thank goodness for Flagil!!

Ashley is very swollen tonight. Her feet are huge. Nancy wanted Ashley to keep her feet elevated as much as possible, but that has been hard. When she sits with her feet up, her back aches terribly. But we did the best we could. Tonight you can also see the swelling in her legs, thighs, stomach, and back. I was rubbing her back and I could leave finger indents if I even put the slightest presssure on her. That can't be good. She was having a harder time breathing, so I gave her more Lasix this afternoon. I hope a little more Lasix will combat the swelling a bit.

Overall, it has been a good day. I have felt more at peace. Jason felt more at peace. The boys were all so well behaved. I am always so proud of them, and what fine young men they are. It is hard for them to be at home. They get bored. But they are still so good. It helps me so much to have them cooperate. My body hasn't been cooperating so well lately. This week alone, I got a cold sore. My cold sores are always triggered by stress. Yesterday I had an occular migrane, which left me feeling yucky for a time. My stomach hasn't been well, and I keep having headaches. I tried to drop my anxiety medication at the first of this month, but have decided that now isn't the time to wean off. Jason agreed. Ha ha ha! It is like a "fer DUH" thing. Jason hasn't felt the greatest today either. He isn't sleeping well at all. I know he carries so much inside his heart. I worry about him constantly. We need to pray harder for the strength we need to get through this time. I think it is starting to take its toll on us a bit. The last thing we need is to get sick. I know with God, all things are possible!! Never forget that! With Heavenly Father and Jesus Christ at the helm, no one will ever get lost in the storms of life. I know this with all my heart!!! (0:

Kam Taylor Pictures

These delightful pictures were taken in June of 2008 by a wonderful woman named Kam Taylor. She is also a gifted photographer who did a marvelous job capturing our family, and most importantly, our beautiful angel. At the time, it didn't hit me just how special these photos were. Now that Ashley is so ill, they are such a treasure to us. It seems like so long ago that she was having better days, was able to eat, smile, laugh. Now those days are gone, and we are so blessed to have wonderful reminders of what used to be. Thank you to Kam Taylor for giving us such beautiful memories!!!! (0:


These beautiful photos were taken by Cindy Sherman, who belongs to a wonderful group called Now I Lay Me Down to Sleep. These are the second group of photos that my family was blessed to have taken. We had other photos which were taken a year and a half ago, when Ashley wasn't so ill. These were taken in September 2009. I couldn't be more grateful for the talents and generosity of Cindy Sherman. These photos we will treasure forever!! I hope you enjoy them as much as Jason and I have. (0:

Monday, December 21, 2009

Monday December 21, 2009

Last night was a very long night. At bedtime, Ashley was very sick, as I mentioned in my blog previously. Her sats were at 55%. She didn't want her oxygen. She was just plain upset. She and I ended up talking long into the night. She wanted to talk about so many different things. She wanted me to reassure her that everyone would be okay after she dies. She worried about her brothers, her parents, her grandparents, her friends. She was especially concerned about her wonderful Grandpa Winn in Evanston. She loves her all her grandparents, but last night, it was him who she was very concerned about. I assured her, we would all have a hard time for a while. We would be sad and miss her, but at the same time, we would be so glad she was not hurting anymore. But, despite all the sadness, we would all be okay. Heavenly Father would help us to be okay. It was so important for her to know that.

She also wanted to know what would happen to her things after she died. She specifically wanted me to make sure certain items of hers were kept in a special place. I assured her once again, that I would make sure to keep all of her special things. They would be put in a safe place, where we would always have them to remind us of our special angel.

We also talked about death itself. I have been reading in the book "Teachings of the Presidents of the Church: Joseph Smith." There are so many lessons in the manual I have not had the opportunity to study. I have such a special love of the Prophet Joseph Smith. He went through so many hard, heart-wrenching trials. He lost several children. He lost brothers and other beloved family members. He was persecuted, hated, put in jail, laughed at, tarred and feathered. Yet, he never once wavered from the gospel. He never once lost his faith. He didn't let all the struggles and sorrows and challenges in this life take away his eternal perspective. He knew what amazing blessings await the faithful. I love this great man, and I am so thankful for the opportunity to study the things he taught while he lived on this earth.

As I was reading a few days ago, I found a quote in the manual that really touched my heart. I would like to share it.

"This world is a very wicked world; and it...grows more wicked and corrupt...the Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again..."

"...the only difference between the old and young dying is, one lives longer in heaven and eternal light and glory than the other, and is freed a little sooner from this miserable, wicked world. Notwithstanding all this glory, we for a moment lost sight of it, and mourn the loss, but we do not mourn as those without hope."

The other quote I loved was this one, also from the same manual.

"Christ Himself has assuredly risen from the dead; and if He has risen from the dead, He will, by his power, bring all men to stand before Him: for if He has risen from the dead the bands of the temporal death are broken, that the grave has no victory..."

"I am glad I have the privilege of communicating to you some things which, if grasped closely, will be a help to you when earthquakes bellow, the clouds gather, the lightnings flash, and the storms are ready to burst upon you like peals of thunder. Lay hold of these things and let not your knees or joints tremble, nor your hearts faint; and then what can earthquakes, wars, and tornadoes do? Nothing. All your losses will be made up to you in the resurrection, provided you continue faithful. By the vision of the Almighty, I have seen it..."

There is also a scripture in the Doctrine and Covenants which also brought great comfort to my troubled heart.

"For verily I say unto you, blessed is he that keepeth my commandments, whether in life or in death; and he that is faithful in tribulation, the reward of the same if greater in the kingdom of heaven. Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much much tribulation. For after much tribulation cometh the blessings..." (D & C 58:2-4)

So why do I include these things in my blog? It is simple. With God, all things are possible. I feel so much stronger when I know I am partnered with Heavenly Father, and His Son, Jesus Christ. I know my prayers are heard. I know They are watching over my family, over my little angel. I know others who have lived before us knew this too. From their examples of faith and courage, I know we can make it through this time.

So back to Ashley. This morning, when Ashley woke up, her arm was very sore. But, it wasn't quite as swollen. When Nancy came to check Ashley, she was pleased with how well Ashley's arm looked. We talked about her low sats last night. Nancy told me it is better not to check them right now. She is very low. We can't change her oxygen levels. She can wear her oxygen, but it won't prolong her life. She won't be higher than 70% ever. Not even with oxygen on. Why burden ourselves with cold hard facts? And why fight Ashley to wear her oxygen? She has always fought me on that. The doctors told me most children figure out at some point that oxygen is their friend. They want to wear it. But not Ashley. Over the past few years, she has seldom elected to wear her oxygen. We don't want to waste her precious energy on battles over oxygen.

Over the course of the day, Ashley did alright. Her pain level stayed under control. Her stomach gave her fits off and on all afternoon. The wonderful part about tonight was that Ashley felt good enough, Jason and I were able to go out on a real live date!! NO JOKE!! Tomorrow is our anniversary, and we really hoped we might have an hour to go out together. Right now, we aren't even sleeping in the same bed. My wonderful sister offered to help us so we could spend some time together. She came over, and we had a lovely night out. We finished up some Christmas shopping. It was so nice.

When we got home, Ashley was ready for us. Her stomach was paining her terribly. She was tired and sore and needing pain medication. I helped her take a bath and get ready for bed.

Over all, today was a good day. It was so nice to have my parents here. They did many wonderful projects with the boys. They cleaned and cooked and ran errands. I was so grateful for all their help. There is nothing like parents to help pick up the ends that we can't carry ourselves.

Sunday, December 20, 2009

Sunday December 20, 2009

I won't be able to write much tonight. Ashley is really sick tonight, and I can't be away from her long.

First of all, yesterday was a better day. We figured out Ashley is allergic to morphine. As awful as that is, I am very happy to have an answer to her extreme nausea and perhaps a little of the swelling. I spoke to my grandma yesterday afternoon, and she told me there are several family members on my mother's side that are allergic to morphine and react exactly as Ashley has since we have had to give her round the clock doses. Her advice to me: STOP THE MORPHINE!! And that is exactly what we did. It definitely helped. Yesterday she was able to eat! She ate some rainbow sherbet and some homemade chicken and noodles. We were all so happy about that!! She was too. In addition to eating, Ashley felt good enough to talk and interact with us a little bit. She even played cards with David and Alicia for a little while. Overall, it was a pretty good day. Last night, she was exhausted. But she didn't once throw up or feel like she was going to throw up.

The one bummer part about discontinuing the morphine is that she still needs something to control the awful pain in her arm. We do have hydrocodone, which is what I gave her yesterday and today. It definitely doesn't work as well as the morphine at pain control. She is at least able to tolerate the pain with hydrocodone on board. Tomorrow I am going to talk to Dr. Etheridge to see if there is something else we can get for Ashley to help control the pain a little bit better. I know there has to be something out there. I have had several suggestions given to me, but we will see what she feels is best for Ashley.

Ashley, for the most part, did okay today. She was super tired all day long. The pain in her arm was pretty severe when she woke up this morning. It took a while to get it under control. She hasn't had much appetite either. Tonight her stomach was gurgly and she was having problems with diarrhea. I was going to give her another dose of Flagil. We finished up the 10 day prescription, and that really helped her stomach discomfort. But since we finished the 10 day course, which was on Friday, her stomach is worse again. I think she may have to stay on it for the rest of her life now. I don't think we can control the digestive trauma without it.

Tonight has been a difficult night. My parents are staying here until tomorrow afternoon, so they pulled out some fun craft projects for the kids to do. Ashley came out into the kitchen for a while with us. She was only able to stay with us for about 10 minutes, and then she had to go lay down again. After she rested, she came out into the living room again so we could celebrate Christmas with my parents. They gave the kids their presents and they each, one by one, opened their gifts from grandpa and grandma. Ashley tried to be part of the celebrating, but once again, she was too tired and had to lie down. I noticed her feet and hands were super blue and very cold to the touch. To me, that said her oxygen levels were most likely very low. I haven't put her on the oxygen saturation monitor for a long time. I decided to see just how low she was. She was only at 55%!! She looked it too! I pleaded with her to wear her oxygen. But she wouldn't. The home health nurse told her she didn't have to wear it anymore. So of course, she won't now. I know if she would have worn it for only 10 minutes, she most likely would have felt a little better. Her body is aching all over tonight. Her legs are hurting so badly, she couldn't walk without assistance. I am certain more oxygen would help with those body aches. Dr. Etheridge said when your oxygen levels get so low, you feel like you have the flu. The body will ache all over just horribly. Headaches are very common. Fatigue is a given. I can't imagine how awful Ashley is feeling being so low. I am certain she never gets in the 70's anymore. I don't know what I can do to help her be more comfortable if she won't wear her oxygen or take her pain medication when I suggest it.

The other thing that was super heart breaking tonight was that she once again asked me when she gets to wean her medication down another dose. By now, we were supposed to have her completely off metoporal. Of course, as you all know, I don't want to remove metoporal until after Christmas. We told Ashley she could have yucky side effects if we wean faster. Tonight, she didn't care. She told me she wanted to get rid of her medicines. She wants to be done with all this suffering. I didn't know what to say. I do want her to be free from this broken body she is trapped in. I know she is so desperately ill. I don't want her to be stuck, suffering day after day. But I don't want her to die before Christmas. Perhaps I need to have more faith. I need to trust God won't take her before it is her time. Even if she did pass before Christmas, Heavenly Father will bless us to get through it. I don't know what the right thing to do is. I am scared to pray for fear I will pray for the wrong thing. I always pray "Thy will be done." I know there is a plan for my little angel. I know that with all my heart. Her life has been spared so many times over the past years. It is a miracle she is 12. I also know, when you have complete faith, miracles do happen. Perhaps she might live until Christmas even without her medications. I don't know. I feel like I could fast and pray for a week and not fast and pray enough. I have so many questions. I feel troubled and worried and weak. I need to spend some time on my knees.

I better go now. I really wish everyone a very wonderful night!! (0:

Friday, December 18, 2009

Friday December 18, 2009

The only word for today is awful. Everything was awful!! Ashley was very sick and in horrid pain from the moment she woke up. I let the boys stay home today, since their aunt and uncle and grandparents were coming, which wasn't the smartest choice in the world. So I had to deal with them all day long. For the most part, they were wonderful. But this afternoon, they were quarrelsome and bored. I knew they were bored, but Ashley was too sick and I couldn't go take them anywhere or do any projects with them. My parents were delayed, and so were David and Alicia, so the help I was hoping to have, didn't come until later on tonight. That made things more difficult.

Because of all the pain in her arm, the nurse suggested we keep Ashley on a low dose of morphine every four hours. At the same time, we would keep her on the zophran every six hours to control nausea. This plan isn't working!!! Not at all! Ashley was so desperately sick all day long. She had horrible nausea. The zophran didn't touch it at all. She was so nauseated today, she couldn't eat or drink anything, and hasn't all day long. She tried a couple of times to eat, but she would take one bite and grab her pan to throw up. She was terribly weak. Nancy told me she doesn't want Ashley to go to the bathroom alone anymore. She doesn't want her to get out of bed without someone in the room with her, for fear she will faint or fall and get hurt. With how weak she was today, I stayed right close to Ashley. She asked for help getting up and down and to the bathroom anyway. She knew and felt how weak and dizzy she was. I helped her several times in the night last night too. I made her promise me, no matter what, that she would wake me up so I could assist her in the night. Thankfully, she did. She apologized up the yin yang for waking me up. But I am so glad she did. I assured her it was no problem at all. (0:

So we have to come up with a better pain control plan. The morphine is making her worse. I know it!! There has to be something else! I know the docs are scared to try anything different, but at this point, I don't care. She cannot go on like she is now. She is miserable enough without hovering over a pan all day long. Tomorrow I am going to ask the nurse, who will be Julie since it is Saturday, if we can try to get her something else. I am feeling frantic about this!! Not being able to eat or drink will shorten Ashley's life tremendously. And it will cause her more suffering! I can't stand to watch her suffer so much! It is killing me!! How much more can my angel take??? I hope that doesn't sound horrible to say, but I can't watch this go on day after day. There has to be a way to make her more comfortable!!! Dang it all if we won't find it!!!!

Right now, Ashley is lying in bed. She was so nauseated again, David and Jason gave her a blessing. My concern, besides the constant nausea, is that she is so swollen!! Everything is swelling and it scares the heck out of me!! Her ankles are so big, it looks like she has two sprained ankles. Her thighs and abdomen were also swollen. Her hands and neck and face also puffy puffy puffy. The arm with the clot is still nearly double the size of the other arm. I am so scared all the fluid that is building up will get into her lungs and make it hard to breathe. Man I pray that won't happen. That is one struggle I can't watch! I can't! It would break all of us for her to suffer like that!!! I can feel my body weakening under the pressure. My stomach has been in knots all night long. I have a headache from Hades, and my stupid ear is not good at all. So today, in addition to the other pains I have felt, I have had to fight the vertigo. I can't handle things well when I am not on top of my game. I need to have so much faith in this whole situation. Faith that Ashley will be able to get through this time in her life. Faith that her suffering won't go on longer than is necessary for her to fulfill her purpose on this earth. Faith that we can let her go, and know we will be alright without her. Faith that my physical body can handle the pressure. Faith that my boys will go through this time and come out the better. So much faith is needed! Am I up to the challenge??

Please keep praying for us. We need all the help we can get.

Thursday, December 17, 2009

Thursday December 17, 2009

Before I write anything tonight, I need to apologize to everyone for yesterday. Jason and I were both struggling. I was in a self pity mode, big time. It was so hard to hear our little angel say to us that she was ready to die. It is hard to see her will to live slowly dribbling away. I know she worries that wanting to die means she is giving up. She has asked me about that several times now. Is she not being strong enough or patient enough? Is she enduring this trial well? I can't believe she would ever think such things. I have never seen such strength!! She has endured well for 12 years now. I told her the other night that she has earned the right to want the suffering to end. She knows what glorious world awaits her! She knows how happy and free she will be. She knows there are numerous loved ones waiting to welcome her with open arms. The pain will end. The suffering will end. And for once in her life, she will have total peace. Jason and I want nothing more than for her to have that. I want her to know, with all my heart, that her loving Father in Heaven loves her so much and is not at all disappointed in how she has carried this burden. He is proud of her, in every way. Just as her parents, grandparents, and many others are so proud of her courage. What an inspiration to us all!!

Today was another agonizing day for her. When she woke up this morning, her arm was still horribly swollen, more so than yesterday. It pained her greatly in the night , and she didn't rest well. We tried the new trans-dermal gel morphine at bedtime, but it didn't work at all. I wish Ashley would have told me how much pain she was in. I was so exhausted, I didn't hear her get up. I didn't know she was hurting. I could have given her the other morphine, so she would have had a better chance of getting some much needed rest. With the horrible night of tossing and turning and trying to get comfortable, her entire body, not just the arm, was aching all over. She wanted to take a bath, to see if that would relieve some of the aches and pains. I gave her some pain medicine, sat with her while she soaked in the tub, and then helped her get back into bed. We decided to try ice on the arm, to see if that would help. I also rubbed her neck and shoulders with warm lotion, trying to relax the numerous knots. The massaging helped a little bit, though not as much as I had hoped it would. She didn't feel like eating, so I let her rest. It wasn't long until she fell back to sleep and rested for over an hour.

This afternoon was the same. The arm ached and hurt so badly, Ashley was beside herself. When Nancy arrived, we talked extensively about pain control options. Right now, we know the morphine works, and with the nausea medicine on board, Ashley has a good chance of tolerating it better. We are working on keeping a little something in her stomach. Whether Ashley nibbles on a saltine cracker or sips some poweraide or eats a popsicle, anything we can think of so her stomach isn't empty. We also cut out other things that she doesn't need, like fiber and vitamins and tums. Nancy felt with those mentioned strategies to keep Ashley's stomach happier, we could then try giving her morphine every four hours. Just a low dose. But keep it in her body so she wouldn't have to play catch up with the pain. I think that is a great idea, but whether or not Ashley's body will agree with that choice, is yet to be seen. There was a suggestion made today that perhaps we might check on a pain killer called Oxycontin. I don't know anything about oxycontin. I don't know if it would work for Ashley, but I am going to find out. There are lots of pain medications out there. Surely, we could find something else besides morphine if the morphine upsets her system.

Tonight my lovely sister and her family came for a visit. We also had a very special friend come over this afternoon to see Ashley as well. Ashley loved having our friends and family here. She wasn't able to talk much, but it was a nice break to the day. Thank you all for taking the time to come visit, even for a short time. It meant the world to Ashley, and to Jason and I.

Tonight, Ashley is once again miserable. Her arm hurt like crazy! She was so tired. Her color looked bad. Her eyes were droopy. She didn't smile. She didn't talk. The one good thing was that she asked for an ice cream cone. I bought her Rainbow Sherbet yesterday, and she loves that! It was so nice to see her eat a little bit. She did try some McDonald's chicken nuggets late this afternoon, but was only able to eat three of them before she felt sick. That, along with two popsicles, was all she ate today.

Nancy and I had a talk about the beta blocker wean when she came today. Dr. Etheridge wants us to wean Ashley very slowly. So at this time, the plan is to keep her on a half dose of Metoporal for the next week, let her body adjust to the lower dose. This should hopefully minimize any side effects from lack of the medicine. After the week, then we stop metoporal, and begin weaning sotalol. I don't want to be in a hurry to wean her. Dr. Etheridge doesn't want us to be in a hurry either. We all want her to be the most comfortable she can be, and minimizing side effects is a big consideration. I feel good about this plan. I hope with a little metoporal in her system through Christmas, Ashley's heart might hold out a little longer. It isn't in our hands. I know there is a plan for her life. Tonight, I feel much more peaceful about everything. I prayed hard today for strength, strength to accept whatever may come, no matter how hard and painful it could be. I know my prayer was heard. We will survive. Here's to hoping this night goes better than last!! (0:

Wednesday, December 16, 2009

Wednesday December 16, 2009

I won't write much tonight. It has been another long exhausting day. Ashley definitely has a blood clot in her arm. The arm swelled even more today, and it pained her all day long. She woke me up at 6:30 this morning in great pain, but she was too afraid to take any pain meds for fear she would throw up again. I don't blame her. Throwing up is just plain nasty!!

I spent a long time on the phone with the cardiologist today. We talked about so many things. I have been so worried and unsure lately. Dr. Etheridge always calms me right down. We talked about the clot in Ashley's arm. She figures the clot could have come from a couple of places. Ashley has a valve in her heart that doesn't work well. When we had problems with her blood being hemalized a while back, it was because of that valve, crushing the red blood cells. The valve could have thrown a clot. With how poorly the heart is pumping, the blood is pooling in her heart. That also could have been the source of the clot. It doesn't matter now what the cause was. The point is, she has a clot and it is painful. Now we have to micro-manage the pain so she can stand it. Dr. Etheridge and the pharmacist consulted back and forth today. They agreed to let us try a transdermal cream as a way to give Ashley her morphine. She would rub the cream on her wrist or forearm, and the morphine would go into her skin and bypass the stomach. It sounded like a wonderful idea to me. We tried it tonight, and so far, she isn't sick at all, and her pain is kind of under control.

The other thing I spoke about with Dr. Etheridge was the pacemaker. Ashley wanted me to ask her what would happen if we turned her pacer off. Dr. Etheridge didn't feel like it would really do anything if we did. She said if Ashley wanted to speed up the process, the place to go would be to wean her from her beta blockers. The beta blockers aren't really helping Ashley's heart to work better. They are there to help control the arrythmias. If we stop those meds, there will be a great chance Ashley will have a catastrophic arrythmia, most likely in her sleep. It would be a very peaceful way for her to go. Dr. Etheridge said if she was to choose a way to go, it would be that way. Nancy and I talked to Ashley about the idea of weaning the meds. That is what she wants. Nancy suggested her waiting until Christmas, but she started crying and told us she didn't want to wait. She wants to wean now. My angel is done fighting. She is ready to go. She asked Jason and I several times if we were okay with her decision. How do you answer that? No I am not okay. I don't want her to go, especially not before Christmas. But this isn't my decision. It is hers, and she has earned the right to tell us what her heart desires. She wants to return to her Heavenly Father. She knows what wonderful world awaits her, and she wants to be there.

So all evening long, we have had to make peace with her decision. It hasn't been easy. I am struggling. Jason is struggling. But we will get through this, one awful day at a time.

Tuesday, December 15, 2009

Tuesday December 15, 2009

Today has been a super long day. Ashley woke up with lots of pain in her neck. She complained about that last night. We figured it was the glands in her neck that were swollen. This morning, I was worried she might have a cavity or something. That would have been horrible. She is way to sick to see a dentist right now. I looked in her mouth to make sure she didn't have any visible cavities, but thankfully, didn't see anything out of the ordinary.

With all the pain she was in, she wanted morphine with her morning meds. I am not sure the morphine caused it, but she got really sick to her stomach, so I gave her the nausea medicine too. The combination of the morphine and zophran made her super sleepy. She laid on the couch the whole morning long, sleeping off and on.

This afternoon, she finally felt like moving around a bit. I noticed when she got up, that her right arm, which is the same arm she had her PICC line in, was very swollen. The arm was swollen from just below the shoulder down into her hand. I was super concerned about the swelling, so I called Nancy. She came right over and took a look. She thought the swelling was directly related to Ashley's heart. It is possible, with her malfunctioning valve, she could have a clot. It is possible, with the narrowing in her aortic arch, and the poor pumping of Ashley's heart, the blood isn't circulating well around her body. Thus, the blood could be pooling in her arm. Nancy wasn't certain the exact cause, but the only way to stop the swelling and find the exact cause would be to admit Ashley to the hospital. She would have to be in the PICU for who knows how long. Ashley did not want any part of that. She never, ever wants to be in the hospital again. She told Nancy and I she wanted to stay at home. So at this point, we are going to try to keep her as comfortable as possible. The arm is swollen, but thankfully it isn't paining her. We will watch the swelling over the next few days, and hopefully the arm won't get any bigger.

The other horrible part of the afternoon, was that Ashley threw up lots again. She didn't feel like eating much this morning, but this afternoon, she was craving pizza, so we ordered pizza. She ate two whole pieces. I was super excited she ate so much. But tonight, I wish she hadn't eaten so much. I am almost positive the reason she got so sick was because of that pizza. She threw up six times. She even threw up after she had taken her zophran, or nausea medicine. I was beside myself knowing what to do!! Thankfully, our wonderful home teacher showed up tonight. We weren't expecting him, but it was an answer to prayers. I felt Ashley needed a blessing to help her get through the night. He came right at the time we needed him, and he helped Jason give her a blessing.

Tonight her vomiting has stopped. Her arm isn't any bigger. She is super weak and tired, and I so hope she can rest. What an awful time she has had today!! Keep praying for her all my wonderful family and friends. I am so scared what the next few days will bring for our family. I am so scared we may lose her before Christmas. I know it is in Heavenly Father's hands. I prayed for such a long time this afternoon, that no matter what happens, we will accept His will for her. I prayed so hard that she won't have to suffer anything more than she is now. I am so scared that with the swelling in her arm, that she might have more fluid in her chest. I can't bare to watch her lay there, struggling to breathe. I have watched her go through that before. It was horrible!! She was so frightened. I could see the fear and anxiety in her eyes. I never want to witness anything so horrible again. I pray so hard, that when it is her time to die, she won't suffer. It will be a peaceful transition from one world to another. That is my prayer.

Monday, December 14, 2009

AShley's Health Explained #5

Alright, so when I left off before, Ashley's C-Difficle infection had just been discovered, and they were treating her for that. They also discovered she needed another surgery to place a Blalock-Taussig (BT) shunt. She had her next surgery on April 30 of 1999. This was almost a month after her original open heart surgery. When they placed her shunt, they also elminated some venous collaterals that were bringing too much blue blood into the heart. It was their hope eliminating those collaterals would help stop too much blue blood from flowing into the heart. Her blood was already mixing. She didn't need more blue blood than red blood.

Of course, another surgery set her back again. She was still on the ventilator. And they were hoping to wean her, but her lungs were not good. She had lots of secretions, and they didn't want to pull the vent out until they knew her lungs would be alright. It was a horrible time. Ashley had grown so weak. And she was unhappy every day. She cried lots and lots. I couldn't hold her very well. The one big blessing that I remembered, was the wonderful Child Life specialists who went above and beyond to keep Ashley as happy as possible. We also had a dear nurse during this time who became Ashley's nurse whenever she worked in the PICU. Her name was Judy, and I always knew when Judy was there, Ashley would be alright.

Well, shortly after that surgery, Ashley's heart rate began to plummet. It would fall very low, and since they had pulled out her external pacing wires, they had nothing to help keep her heart rate where it was supposed to be, short of medicine. They did start her on a medicine to keep her heart rate up. It made her super jittery. I can't remember the name of it now, but it made her feel awful. They had to take her into surgery again the following day to implant a pacemaker. That happened on the 4th of May, 1999. She did well in that surgery, but we still had the fight with the vent. Her lungs were wet and the chest x-rays looked murky. I don't think I ever prayed harder that I did at that time for her to get off the vent. Finally, they decided to try to wean her. The night before, my uncle came into the PICU and gave her a blessing. I prayed all night long it would finally work. The Lord heard our prayers. They were able to get her off the vent!! But, then a whole set of new problems surfaced. First of all, her swallow was messed up. Everything she drank went straight into her lungs. Second, she couldn't talk. They were worried her vocal chords were ruined for life. They had to scope her vocal chords and throat to see what damage was done. She was also so weak, she was unable to sit without help. She could barely hold things in her hands. She couldn't stand or walk at all. I couldn't believe how much she had lost over the previous month and a half. We had to start her on both physical and occupational therapy. They had to put her on C-Pap, to keep her lungs open. The respitory therapists had to come bang on her chest three times a day to help keep the secretions cleared. She had a feeding tube, but was unable to eat or drink anything by mouth, which was hard. She was so thirsty, as you can imagine. She would cry for water, but we couldn't give her any. She also had trouble with one of her eyes looking droopy. We had to get a cat scan done to make sure she hadn't had a stroke. The problem never did go away before she was discharged from the hospital.

Finally, almost two months from her first open heart surgery, she was released from the hospital. They actually sent her home before most of the doctors thought she was ready. The only reason they let her go was because she was so depressed. They were worried if she stayed any longer, she might get sicker, and not better. I had been at her bedside every day, morning and night, for the entire time. I had learned everything I needed to know to care for her at home, and they knew I was competant and reliable to do what was needed.

So nearly a month before her second birthday, we got to take our angel home. And you know what she ate the whole way home: ICE CHIPS!! No joke! Once they let her have ice, she went nuts!! That was her favorite thing for the month following her release. She was very weak, and sick still, but she was alive, and in her own home. It was truly a miracle!!

Monday December 14, 2009

Sorry for the lack of update yesterday. It was a busy day, and by the time I had time to blog for a bit, Ashley was too sick and needed me. Yesterday was actually a fairly good day. These days, Sundays are always such a bright spot. I love the spiritual refill. I need it. The boys need it too. We enjoyed church very much. Ashley felt about the same most of the day. Her stomach didn't bother her quite as much. Her stomach continues to get better. She still fights with nausea and diarrhea, but it is lots better. Thank goodness for Flagil.

Last night, her biggest problem was her breathing. We discovered yesterday that she had gained five pounds in three days. It is not healthy weight. It is water weight. I saw it yesterday. Her face was more swollen. Her hands and wrists, feet and ankles were more swollen. Her stomach was horribly swollen. I gave her a slightly larger dose of Lasix last night, hoping that might help move a little more water off her before bedtime. She was struggling enough last night, she wanted morphine and ativan. Ashley also was struggling with itching last night. Around her lower back and down her legs, it was awful. So, we tried a dose of benedril. Man, with all those drugs on board, she was like a zombie. Surprisingly, she didn't fall asleep as well as I thought she would. We watched the Nativity Story until after midnight. I fell asleep right before the movie ended. She woke me up half an hour after that to ask for help getting to the bathroom. She told me this morning she laid awake for a while last night, even after I had helped her. Even with all those meds on board, sleep was still hard to attain.

This morning she slept in for a long time. My visiting teachers were coming at 10:00. I thought Ashley might sleep clear until they came. She woke up at 9:45, so we had enough time to get her some breakfast and for her to take her meds. She didn't feel like visiting while Sara and Jaymie were here, so she stayed in bedroom. I was grateful she wanted to eat breakfast. I figured with the rough night she had last night, she might wake up feeling awful and not want food for most of the day. But thankfully, she did want something to eat.

So throughout the day, she remained about the same. She was still really puffy all over. When the nurse came today, she wanted me to bump all three doses of her Lasix up. We are now at the max dose she can be at without consulting the doctors in Salt Lake. I don't know what will happen if the higher dose of Lasix doesn't keep the fluid off. That scares me to death. But we will cross that bridge when we come to it. For now, we will see if the higher dose helps her.

Tonight she just plain felt awful. Her body was aching all over. Her stomach was hurting. She was having arrythmias. It was hard for her to breathe. She had been in bed most of the evening, but wandered out in the kitchen while I was doing the dishes and sat with me for a bit. I could see in her eyes how poorly she was feeling. She finally broke down and confessed she needed some meds to help calm her down and take the edge off. She is in bed now, looking very sleepy. I am really praying she can rest tonight and that her pain will subside. Just one day at a time. Lots of faith and prayers that she can carry these burdens that are hers to bear. I am so grateful for the knowledge that someday our little angel will be freed from her earthly burdens, and be in a beautiful world, where she can be at peace and rest from the cares of the world. Isn't the gospel of Jesus Christ such a blessing and a comfort to us!!! (0: Isn't it wonderful that we know what will happen when she passes on to the next life!! Isn't is great that our family can be forever!! I am so grateful for this knowledge!!

Saturday, December 12, 2009

Saturday December 12, 2009

Yesterday was another awful day. I don't mean to be depressing, but it was horrible from the start. Ashley felt super sick all day long. She and I were both emotional, and I was exhausted, emotionally more than physically. We had both been up really late the night before. She wanted to talk again, so we sat up for a long time, chatting and crying and talking about lots of different things. The new thing she is wanting is for her pacemaker to be turned off. I have no idea where that came from. She brought it up the night before last. She wanted to know what would happen to her if we shut the pacemaker completely off, and if it could be done without surgery. I am sure they could simply put the paddle over the generator, and change the settings that way. I had no idea what to tell her when she asked me such a question. I have no idea what her heart would do, or what other symptoms would be created without the help of her pacer. She asked me if she would suffer more. I have no idea. We spoke to Nancy about it when she came yesterday. Nancy felt like without her pacer, Ashley would die very quickly. Her heart rate would fall dramatically, that much we are pretty certain of. It could make her death a very horrible experience. Nancy felt Ashley shouldn't pursue that idea until she at least completes the 10 days of Flagil, and we talk to Dr. Etheridge. With an infection, her body will have to work harder and she will feel more poorly. Nancy is hoping once we get the infection under control, Ashley might feel slightly better. I don't know if she will or not. Without eating, her body will continue to get weaker and weaker. She still can't eat well, although her stomach is better now that it was last week. That is a blessing.

The point of fact is, Ashley wants to go now. She is so tired of hurting. She has no quality of life anymore. She is too sick to enjoy anything. We can't do projects like we once did. Even taking baths has become a huge task for her. She doesn't feel like reading or drawing or playing computer. The only thing she is able to do is lay in bed. Then lay on the couch, then back to bed. She is too weak to get upstairs. She is too weak to walk around the house much. She is done with it all. And I don't blame her. When I was so sick a few years back, life was so challenging. It was all I could do to get out of bed in the morning, and take care of my little ones. I wasn't sick like Ashley is now either, but there was more than one time that I felt like death would be a better option that living such a miserable existance. And it was a horribly miserable time for me!! So in a small way, I have empathy for her plight. The one thing I want, and I hope this isn't selfish, but I want to have her with us for one more Christmas. If she were to die now, Christmas would never be the same for us again. I struggle with Christmas anyway. I hope that isn't a stupid mother's request. I would never want to prolong her agony. We do have to let her go. I know this. I pray every day I can let her go. But it is so hard. It hurts so much!

I wanted to thank those ward members who were involved with the 12 days of Christmas for our family. Today was the 12th day, and we were blessed to have a special experience. A bag piper from Boise came to our house, drove here in the awful weather, to play music for our little angel. It was such a fun experience. Ashley enjoyed it. The boys enjoyed it. We have all enjoyed the various gifts that have been brought to our door over the past 12 days. Our little elves went above and beyond as they served us. So thank you to all who participated in this venture.

Please everyone be safe as the weather worsens. We love you all. Thanks again for so many prayers and for all your faith!!

Thursday, December 10, 2009

Thursday December 10, 2009

Tonight my body is near exhaustion. It was a long night and another really long day. Ashley was feeling completely miserable last night. She couldn't sleep, so we sat up and talked for a very long time. She wanted to talk about death. She wanted to know what it would be like when she died: would it be quick? Would she just fall asleep and never wake up? Would it happen during the day, and if it did, would she be in pain? So many hard questions, many of which I don't have answers for. She also wanted to know what it would be like, once she crossed over the veil, into the spirit world. Who would take care of her? How would she feel? I tried my best, and prayed for help, to answer these very hard and poignant questions. We cried together for a long time, my beautiful angel and I, late into the night.

As you would expect, being up so late, she woke up this morning feeling very very sick. We were supposed to get our hair cut today. That is one thing we have done together for many years. It is our girl time. (0: But today, she was so sick, she couldn't go. She didn't even have the strength to get out of bed. It broke my heart that I couldn't take her with me.

When I arrived back home, it was almost 1:00. I had taken Austin with me to get his haircut, and then he came with me to do some needed Christmas shopping. I hurried as quickly as I could to get home to my angel girl. She was still really sick, and hadn't been out of bed. She wanted to eat Hamburger Helper, so I fixed her, Jason, Austin, and myself some lunch.

It wasn't long after we started eating that my neighbor came over with her darling baby for a visit. Ashley was able to hold the baby for a couple of minutes, but she felt too awful to stay out of bed for long. I ended up talking with my neighbor for a while. I was grateful she took the time to come and see Ashley and bring her little guy. I was hoping it might brighten her spirits a little bit to see the baby, but she was suffering enough, and sick enough, even the baby didn't help. She did take a bath for a bit, but that didn't help. We finally resorted to Ativan, which made her so loopy, she couldn't walk around the house at all then. It did help to calm her emotional state down. She cried so much this afternoon! It was awful!!!!!

Tonight we had more visitors who came over to bring up some Christmas goodies. Ashley tried to play with their two children, but she didn't have the strength, and had to once again, go back to bed. She was so weak. I assured her she didn't have to talk to anyone. They just wanted to wish our family a Merry Christmas and let us know they were thinking of our family.

Tonight her stomach is paining her greatly. Her whole body hurts. She looks awful. Her color is more gray tonight that it has been in a long time. She struggles to walk around the house. She struggles to get to the bathroom. Everything has become a major chore for her little broken body. She is tired of everything. Life absolutely has no joy for her. How long she will remain with us, I have no idea. It is just heartbreaking to watch her suffer so!!!

I have to mention, really quickly, that my wonderful family and extended family members purchased the tree my wonderful Aunt Jill decorated and entered in the Festival of Trees in Sandy Utah in behalf of Ashley. The tree was so beautiful! They all went together and bought the tree for Ashley. Then they had it shipped to our house. It arrived yesterday. I can't tell you how much Ashley enjoyed that tree! It is covered with beautiful white angel bears and heart shaped pillows. When it came, she laid under the tree for a long time, just looking at the lights, holding the two large bears and small baby bear that were under it. It was a wonderful gift!! I can't thank everyone enough for chipping in to make it possible for our angel to have this tree. She loved it! It made her smile! And that was a miracle!!! We love you all!!

Wednesday, December 9, 2009

Wednesday December 9, 2009

Due to the lateness of the hour, I won't write much tonight. Ashley has had a really rough evening. Tonight she was so hungry, and her stomach felt good enough, she wanted to eat some chicken nuggets from McDonald's. I was reluctant for her to eat them, but she hadn't eaten well all day long. At least that was something. As it turned out, it wasn't a good choice. Those chicken nuggets made her stomach awful sick. Her diarrhea flared up. She was sick to her stomach. It was awful! On top of that, she has been desperately tired all day long. Tonight, with all the digestive distress going on, she was even more fatigued, which made her emotional. She cried and cried and then apologized for crying. I encouraged her to take a bath. Hot baths always seem to relax her aches and pains a bit. She finally crawled into the tub. I read to her for a bit. That did help her to feel a little better. She also found out she could use the massager on her stomach to ease some of the pain. While we were reading scriptures, she laid on the couch with the massager rubbing her stomach and fell asleep for a bit.

I am afraid the tiredness isn't going to improve. Nancy was very up front with us today. Ashley's heart, as it continues to fail, will make her more and more tired. This is the new norm, and now we have to adjust to it. It means every day life is going to continue to get harder for our little angel. Right now, she is finding out walking around the house makes her out of breath. Sometimes walking to the bathroom is difficult. She feels so weak, on top of the fatigue. I am so grateful that she has had a little relief from the digestive problems. That is a huge blessing!! We will continue to pray that she will have to strength to keep moving forward.
I have so much more to write. But tonight, I won't get to. Ashley needs me now. Thanks again to everyone for everything!!

Tuesday, December 8, 2009

Tuesday December 8, 2009

Sorry for the delay in writing. Last night, Ashley needed her mom. I spent the evening with the boys, helping them with homework and cleaning the house. I hadn't spent enough time with her. At bedtime, she was hurting all over and feeling very neglected. So I helped her take a bath. We have been reading The Secret Garden together. While she bathed, I read. She can no longer be left alone while in the bathtub, because she is so weak and could fall. So the times she is in the bathtub have become optimal times for me to sit and read to her. She likes it and I like it too.

After she got out of the tub, she crawled into bed. She was still feeling awful. One of the comfort things she likes, is when I sit and gently run my fingers up and down her arms, her feet, and sometimes her face. She also likes me to gently stroke her hair. Last night, I sat with her and stroked her for a long time. I felt her body finally relax. She seemed to sleep pretty good, although she was up and down to the bathroom a couple of times in the night.

I neglected to mention, on Monday morning, when Nancy came, she and I discussed Ashley's worsening stomach/intestine symptoms. With my pediatrician out of town and our wonderful cardiologist out of town also, I was feeling a little lost as to whom to consult for additional help. But after talking to Nancy, we decided to start Ashley on her Flagil for a little while. Ashley has had lots of problems with C-difficle infections in the past. Her symptoms when she gets such an infection are exactly the same as the symptoms she has now. Nancy felt like it wasn't just protein loss we are fighting with right now. She felt like perhaps Ashley might be trying to get a C-difficle infection again. The good part is, we have Flagil on hand, so no prescription chasing to get some. The plan is to keep her on it for the next couple of days and see if it helps her. If it does, we will keep her on it for 10 days. If it doesn't help, well, we are back to square one. But so far, based on what I have seen today, and from what Ashley has said, it is helping. What a blessing it would be if her problems were related to an infection. We will see what the next couple of days brings.

Today was a quiet day. Over the past couple of days, Ashley's digestive trauma has definitely improved. She is still having problems, and not eating well, but she has not had the overwhelming agony that consumed her last week. The main problem that is bothering her is that she is so weak. She feels too tired to do much of anything. She hasn't felt like projects or going for car rides. It is so cold right now, I am glad she doesn't want to go out much. She gets cold so easily, and there is still a very high risk she will get sick. Her immune system is severely compromised. She has preferred to lay in bed and rest. Today we did take a few minutes to mix up some sugar cookies and cook them together. She took a bath this morning, and so we were able to read for a long time. That was fun. Tonight she stayed in bed all evening long. I made chicken and noodles for dinner tonight, and she was able to eat a little of that. She also ate a piece of bread and butter. Everything she can get down and keep down is a blessing.

I really wanted to point out that our fasting really did work! On Saturday, I was in distress! She was suffering so greatly!! And there didn't seem any way for her pain to be taken away. So we turned to the Lord. We fasted and prayed. And our prayers were answered. The problems weren't necessarily taken away, but all of us have felt peace. Ashley has been at peace. She said tonight that even though her stomach isn't better yet, her other symptoms have gone away. She isn't having chest pain or headaches. Her heart hasn't bothered her with strange rhythms. She told me she could handle the digestive problems so much better when her other symptoms were gone. I know, that is a direct blessing from her Heavenly Father. He is helping her. He has increased her ability to handle the trials she has been given. I know that blessing came from Him.

Thank you all for combining your faith with ours! It worked! And for a time, we have peace.

Sunday, December 6, 2009

Ashley's Health Explained Revision #1

Oh wow! Love the blue! Cool! Ok, so I totally messed up explaining some things about Ashley's heart. It is so complicated, it is easy to do. So I decided to list, from her medical records, all the defects that were present at birth. I am currently studying about the heart, to better understand what normal is. I hope that will help me to understand just how messed up Ashley's heart was, and still is now.

Situs Inversus (meaning stomach and liver are on the opposite sides.)

Pulmonary venus drainage to the right-sided morphologic left atrium.

Systemic venous drainage to a left-sided morphologic right atrium.

Interrupted inferior vena cava with hemiazygous continuation to the left superior vena cava

Absent right superior vena cava

Hepatic venous drainage to an interrupted inferior vena cava with some hepatic venous drainage to the systemic, left-sided venous atrium.

Large ventricular septal defect

Hypoplastic right ventricle with small tricuspid valve.

Subaortic stenosis

L-malposition of the great arteries

Right aortic arch

Coarctation of the aorta

Okay that was a lot of medical gibberish. At one time, I was asked to come into a nursing class with Ashley and explain to the class all her defects. I will explain them correctly at another time. But as you can see, she had lots of things wrong with her heart. And of course, the initial problem they found before finding all these defects, was that her esophagus wasn't attached to her stomach. The fact that she is currently 12 years old, and has continued to live for so many years, is truly a miracle.