Wednesday January 6, 2010

Today has been a fairly good day overall. Last night was another long night. I have decided getting sleep is way over-rated. Reminds me of the days when my children were small, and I thought I would feel like a zombie forever. Ha ha ha! It is alright. I don't mind staying up late, or popping up and down in the night. Ashley was good enough to wake me up, and to me, that is wonderful! I was so worried she might try to get to the bathroom by herself and fall or something horrible like that. But she didn't. She was persistent and woke me up so I could help her. I was grateful, and I can deal with the effects of no sleep knowing she was alright.

So today, not many major changes to note. Her lower body from the shoulders down is still very swollen. Her feet were a little worse. Increased lasix doesn't seem to help with the lower body, but at least her lungs and face were alright. If she can breathe, I am happy. Her digestive system seemed to flow pretty well. That is also a blessing. She didn't eat much, but she did eat.

We did have quite an adventure trying to bath her this morning. She was pretty sweaty when she woke and was worried she was stinky. I was laughing about that! Very typical 12-year old girl comment. (0: The main problem with the bath was getting in and out of the tub. Her legs wouldn't hold her. I tried to lift her, but only succeeded in squeezing her waist and hurting her back. Miraculously, I was able to get her safely out of the tub and back into bed without her collapsing. She was exhausted by then and promptly fell asleep for a little bit. She did spend some time in the living room after that. I think the change of rooms was a nice break for her. While I was reading with Preston this evening, she came out again for a few minutes. She felt like sitting with us while we read Island of the Blue Dolphins and the scriptures. I don't think she has felt like coming out for story and scripture time for several weeks now. It was nice she could tonight.

I did lay down by her this afternoon, when she napped. It was nice to catch up on my sleep a little bit. It is amazing what even an hour of sleep can do to rest the body and soul. Jason was able to be home with us this afternoon. I am so grateful he is able to be at home, with Ashley and myself. He isn't able to help her get to the bathroom and other such activities, but he knows how to make Ashley smile. He knows how to make us all laugh. He fusses over me constantly. He helps get kids ready for school, drops them off and picks them up. He runs to the store and the pharmacy. He cleans, cooks, and runs interference with the boys. He gets up in the night to give blessings. I am so glad I married such a wonderful, kind, compassionate, righteous, handsome man who every day makes me feel like an 8 cow wife. I couldn't do this without him. Never!

I have to share another very special experience. But first, a little background. When Ashley was in kindergarten, she became friends with a very special young lady named Kiara Badger. Over the course of that year, these two girls became inseparable. Kiara saw something wonderful in Ashley. Ashley saw something magical in Kiara, and to this day, they have remained the closest of friends. A few days ago, Kiara put together a powerpoint presentation for Ashley. Her delightful mom, who is also one of my closest friends, emailed the file to me a couple of days ago. At first, we couldn't see the slide show with music. Then Sarah found a way to send me a file that showed the slides and had the music Kiara had picked. I couldn't get that file to open either. Kiara was so eager to get the presentation to Ashley before she was took sick to enjoy it. Tonight, Kiara's aunt drove all the way to our home to bring me a DVD with the presentation on it. We were finally able to see Kiara's masterpiece. I am going to try to post it on this blog. I can't believe what an amazing job she did!! It was so touching!! I can't thank her and her wonderful family enough for being our friends, for taking the time to send this special touching message to my angel. It made Ashley's whole night! And mine!! (0: Tears and all! Ha ha ha! I want to share it with you, and will try to post it. If it doesn't work, I will have to have Jason help me. I know you will all enjoy it as much as we did! We love you Sarah, Kiara, Eric, and Tyson!!!!!

Again, a very special thank you to all the wonderful sisters who gave freezer meals to Sara Hodges for our family. I was floored when I saw all the food they sent! What a blessing! What a lift for me! I love you all! Thanks for being our angels!! There are angels among us!! Love you all!!!

Tuesday January 5, 2010

Another day and we survived. Last night was another long night. Ashley and I were up for a long time. She had a hard time falling asleep. We watched a movie and then we read from the Friend. It was around 1:00 before we fell asleep. I made her promise me no matter what, she would NOT get out of bed without my help. I was so worried she would wake up, not want to bother me, and then try to get to the bathroom by herself. I knew she was not strong enough to do that. She was a good angel. She did wake me up. This morning when she finally woke, the first thing she asked me was if I was okay from lack of sleep last night. That is my girl. She is always thinking of others, no matter how horrible her suffering is.

I really felt like the additional lasix helped with her facial puffiness. I don't think her legs and back looked any better, but at least I could see her eyes. When Nancy came, we agreed she looked better today than she did yesterday. Her mind wasn't so foggy. I didn't give her morphine or ativan this morning. Her back was hurting, but she didn't want any pain meds. I finally convinced her to take advil. She wasn't very to willing to do that. But thankfully she did. It helped a little bit.

Overall, I felt the morning was better today than yesterday. She seemed more comfortable and she wanted to eat, which was delightful to me! (0: This afternoon, she was super tired. She laid down and fell asleep just after 2:30. She didn't wake up until 6:00. Jason, bless his heart, ran interference with the boys so I was able to take a nap for most of an hour. It felt good to sleep. I have to say, I was exhausted this afternoon. My ear hasn't been very good today. It was nice to take some advil and sleep for a bit. Nights are not restful anymore.

We also had another wonderful blessing tonight. My wonderful visiting teacher showed up with dinner. I can't tell you how much that meant!! I wasn't feeling the greatest, and to have dinner already made, made my whole night!! (0: Thank you Sarah for your thoughtfulness!! I didn't think I needed help with meals, but I found out, I did. And it was YUMMY! (0:

When Ashley awoke, she was in horrible pain and I had missed her 4:00 dose of lasix so she was working to breathe. It took me an hour to get her calmed down. She cried and cried. I felt awful! I would have awakened her at 4:00, but I knew how tired she was. I figured it would be alright to let her sleep. I don't think I will let her sleep like that again. I can't believe how missing a dose of lasix by two hours can effect her. It was scary!

Through the evening, she stayed in bed. Her back pain finally subsided enough she felt like sitting up. Eventually she wanted to eat a little. Tonight begins our second sotalol wean. We half her night-time dose. I know it is what Ashley wants, but it scares me what will happen. She is already so weak and sick and swollen and miserable. The one thing I know, with out a doubt, is that Heavenly Father will NEVER give her more than she can handle. If things get harder, she will be strong enough to deal with the burden. We will be strong enough to watch her carry her very heavy burdens. Only He knows what the plan is.

I have to share one more neat experience before I finish this entry. Ashley is ready for me now, so I have to be brief. Yesterday, when I woke up, my anxiety was through the roof. I felt sick. I felt emotional. I didn't know how I was going to make it through another day without falling apart at the seams. I spent some time crying and praying, pleading for strength for Ashley, for me, for Jason, for our boys. Last night, Bro. Orton came over and helped Jason give Ashley and myself a blessing. When Jason gave me my blessing, the one thing he said was that I was strong enough to get through this trial. He told me Heavenly Father was with me every step of the way. I would never be alone. I can't tell you how my heart was filled with overwhelming peace. I knew, with every fiber of my being, things would be alright. I knew I would be strong enough to keep myself put together. I knew my husband and sons would be okay. For the rest of the night, my heart felt so light. Even today, with the increased pain in my ear, I felt peace. I didn't feel like a bundle of knots. My stomach wasn't hurting. Never, ever doubt that God hears and answers our prayers. I know, He heard mine.

Monday January 4, 2010

Today has been another long day. Ashley was up and down several times in the night last night. She woke me up at 4:30 because her back was in great pain and she wanted pain medicine. I massaged her back for quite a while before she was able to fall back to sleep.

When she got up, she looked awful. Her color wasn't good. Her face was so swollen, her eyes were like little slits. I was very concerned. When the nurse came, she took one look at Ashley and agreed with me that we need to increase the lasix again. With the next sotalol wean coming soon, we have to get on top of this swelling as much as we can. It is only going to get worse as her heart continues to fail. Thankfully, she can breathe without difficulty. That is a miracle in itself. With how swollen she is, she should have more respitory distress. She doesn't. Not an accident I know.

Nancy and I discussed her back pain. I also consulted with Dr. Etheridge this morning about the pain, and the sotalol wean, to make sure she thinks it is okay to wean as quickly as we are. Both Nancy and Dr. Etheridge feel like Ashley's pain is coming from all the swelling in her lower back. Plus, she is in bed most of the time now. Staying in one position doesn't help. Dr. Etheridge suggested using advil to see if that would help, as well as heat. The heating pad doesn't work. We have tried that. Rubbing her back helps a little. Morphine takes the edge off a little bit, but doesn't block the pain enough. Thankfully, after she took some advil, she was able to have some relief. She can take advil with morphine and have no problems. That is also a wonderful blessing.

Ashley was super tired and weak, even more so than yesterday. I am not sure if it was the drugs, or just the extreme fatigue, but she had a hard time talking and thinking. Several times she tried to get up by herself to get something. She would ask me the strangest questions. At lunchtime, she got upset because she thought she lost the pepper shaker forever. It took me a few minutes to convince her the pepper shaker was still here. Just strange stuff. I have to watch her getting up and down. Last night, while I was blogging, she tried to get off the bed and collapsed on the floor. It scared me to death! She was ok. But she did tell me that everything went black before she woke up on the floor. Today her legs wouldn't hold her weight when she tried to walk to the bathroom. We ended up bringing in her wheelchair to get her back and forth. How grateful I am for her little purple wheelchair!! (0: I don't know what we would do without it.

So the plan continues forth. Tomorrow night, her dose of sotalol will be cut at bedtime. What that will bring, no one has any idea. I pray every day, no matter what, Ashley won't have to suffer. I know Heavenly Father won't give her more than she can handle, but it is killing me to watch her grow weaker and sicker and more unhappy with each passing day. Oh to see her be at peace!!

Sunday January 3, 2010

Today has been a strange day. We didn't go to church. Sundays are never as happy without going to church. My stupid ear is really bad right now. The pain was shooting up into my head and I decided it was time to get some medicine. I am on an antibiotic now, but I still felt sick, and of course, fought with the dang vertigo, so we all stayed home.

Ashley and I were up really late again last night. She was having a hard time falling asleep. Her back and legs were aching. We couldn't find a position she was comfortable in. She was emotional. Her suffering was so intense! I knew she was miserable. What comfort could I offer her? She didn't want a blessing. I didn't want to push her that way. So we just sat and talked. She fears everyday that she will become too big of a burden to Jason and I. She fears one day he and I will walk away from her, and not want her anymore. It took me several minutes of intense talking to convince her she is NOT a burden to anyone. Her illness has inspired so many lives. Because she is sick, so many people have been blessed with opportunities to serve, including myself and Jason. Our family is closer to Heavenly Father than we have ever been. Our extended family members on both sides of our families are closer because of what they have done for us. I feel like the heavens have literally been opened and we have been showered with strength, encouragement, service, and love. We have had many wonderful spiritual experiences that have cemented our testimonies of the gospel. We have witnessed miracles, time and time again over the course of Ashley's life. Someday, I will continue Ashley's story and share just how many times her life has been spared through miracles. None of these amazing things would have happened without our little angel!!! What a blessing she was given to us! Heavenly Father knew we needed her. I am so glad she is ours!!

Throughout the course of the day, Ashley has been plain out miserable. Everything is a major chore, from moving pillows on the bed to going to the bathroom to walking into the kitchen. She struggles with it all. I noticed more swelling in her back today. Her ankles were the same, but the swelling is spreading up her torso. Her face has been pale and puffy. She didn't sleep as much today and hasn't eaten hardly a thing. The pain in her back has been intense several times today. I spent over an hour tonight rubbing and massaging it, trying to relieve the pain. For some reason, the morphine isn't relieving the pain. I am concerned that her pain may be coming from her kidneys. They are probably really stressed with all the diuretics she is on. I hope they will hold out and not be the cause of her intense back pain.

I did take the memory foam mattress off her hospital bed and put it on my bed. Fortunately we have a king size bed, so it fits alright. I was hoping a softer bed might help ease some of her body aches. Nothing really makes her comfortable, but I am hoping it might at least give her a little relief. I am not sure that helped, but at least it made me feel better.

What this week will bring, I don't know. How much longer Ashley will be with us, I don't know. But I do know our loving, wise Father in Heaven is watching over us. He is watching over Ashley. He will help us no matter what happens. I trust in that with all my heart.

May you all have a wonderful week!! Thank you for all your faith, prayers, thoughts, notes, etc. Every little bit helps!! (0:

Special Thank you to Idaho Watersports

I have to write a fast thank you to all the wonderful staff at Idaho Watersports. Because of all their sacrifices, Jason has been able to be home over the past week. His help is so vital! Not only do I need him, but the boys need their dad. I spend most of my time by Ashley's side, so I don't get time with the boys. I was so worried about them. Jason stepped right up. He played with them. He fussed over them. He helped me with dishes, laundry, vaccuuming, and entertaining family and friends. He went shopping for me when I wasn't able. He fixed food when I couldn't. He has been so kind to listen to me when I need it, let me cry when I can't hold the tears back any more. When he is home, I feel calm. Ashley feels calm. I know he treasures every moment he has to spend with Ashley. We treasure the time we get with him. (0: Right now, that is where his heart is. At home, with us.

So thank you all for making it possible for him to be home!!! I know it hasn't been easy. You are all the angels we needed this past week. Much love to you! May you be blessed for giving so much to our family!!

Saturday January 2, 2010

Last night was a hard night. Ashley's back was paining her greatly. I didn't know what to do. I had given her morphine and ativan to help control her pain, but she was still uncomfortable. The only relief came from me rubbing her back, which I did a couple of times. We both slept restlessly. I found myself awake in the night, pleading once again for help from heaven. I was so worried Ashley could have an infection, or perhaps another clot. Both thoughts terrified my heart! I prayed for a long time that if the Lord willed it, she wouldn't have to endure anything more than she is now. That she could have some peace. She woke me up at 6:30 this morning in horrid pain. I got her some more pain medication, and massaged her for little bit. She was finally able to go back to sleep. Again, I prayed and prayed and prayed.

I know the Lord heard my prayers. Today was a peaceful day for Ashley. We began her sotalol wean, so I didn't know what to expect, if anything, over the course of the day. But nothing strange happened. Ashley slept most of the day. She only woke long enough to eat a little bit, and to use the restroom, but other than that, she slept. I kept checking on her every few minutes. With how much she was sleeping, I was concerned. But all was well.

Tonight, her lower legs and feet are horribly swollen. I know the circulation isn't that great because her feet and hands are always cold and gray looking now. Ashley struggles with her feet falling asleep. That happened two times tonight, when I was sitting with her. When the feet wake up, they hurt so much! She hates that, but I don't know how to help with that problem. We try to keep them elevated as much as possible. I don't know that it helps much. Her heart isn't circulating the blood well in her body. Things just get backed up. If the swelling continues, we may have to increase her lasix again. Nancy thinks with the sotalol wean, she may retain even more fluid that she is now, so she told me to prepare for that. Of course, no one can predict what will happen for sure. Ashley is not a textbook patient. Never has been. It is Heavenly Father's hands now. Only He knows what the next week will look like for her. We pray it will be as peaceful as possible. She is suffering so greatly already! I can't imagine any more burdens for her to carry!

Friday January 1, 2010

Happy New Year!! I wish I could say we have had a good past couple of days. But I can't. Ashley has been very sick. Not that she wasn't before, but it was like her guard came down after my mom and sister left. She totally collapsed in exhaustion. We have had lots of company over the past week. It was so nice to have so many friends and family come visit. This is the last opportunity they will have to see Ashley, and it was super important for everyone to get to see her one last time. Truth be told, it wore her out. Yesterday, she cried and cried. She was so exhausted, she didn't get out of bed. In the morning, after mom and Tammy left, she slept for almost two hours. She only got up for a little while, to try to eat, and then she slept for another two hours. The rest of the evening was spent in bed, sleeping off and on. Her swelling was much worse, although she wasn't working to breathe. She had almost no appetite. All she wanted was for me and Jason to be near. Her request to me was for no visitors anymore. She said she didn't have the strength for anyone to come. When Nancy came yesterday, I spoke to her about Ashley not wanting to see anyone, not even family members. Nancy said Ashley knows her life is coming to a close. Her strength is spent. What she does have left, she wants to share with her immediate family members only. Nancy felt we should honor her request and not let any visitors come, not even family. That is really hard. I don't want to deny family members visiting rights, but at the same time, I don't want any regrets. I want to know I did all I could for my angel, to keep her comfortable and as happy as possible in her last days on earth. If that includes no visitors, so be it. So everyone, please know our request for no one at the house is not because we want to keep people away. It is for the happiness of our angel. Thank you all for understanding that!!

Today was another long, awful day. Nancy encourages us to be positive, but tonight I am not feeling very positive. Ashley was upset and sick from the moment she woke. Her whole body was in pain. Her legs, her stomach, her back, neck, arms. The pain medication helped, but she was still miserable and uncomfortable all day long. She hasn't hardly eaten a thing today. I am giving her flagil to help with the stomach discomfort. I don't think the flagil helped much. She had diarrhea several times and her little belly growled and gurgled. I sat with Ashley this afternoon and massaged her stomach for almost an hour, trying to ease her pain a bit. It helped a little, but not much.

Tonight she looked bad. Her face was horribly swollen. She was pale and very weak. She struggled to lift the blankets so she could get out of bed. She cried and cried and cried. I know her suffering is great. I know she hurts all over her body. She is so ready to be done with this broken body. Tomorrow morning we begin weaning her sotalol. Sotalol controls abnormal heart rhythms. We have no idea what new symptoms she will have once it is reduced, and eventually eliminated. With how unstable her heart is now, Dr. Etheridge predicted Ashley will have a fatal arrythmia, most likely in her sleep. But no one knows what will happen. We are praying hard that no matter what, Ashley won't have to suffer any longer. We can't bear to watch her struggle more than she is now. It is heartbreaking!! Her life is one miserable day after another. It is my prayer, that soon, she will be free from all her earthly burdens.