Friday January 15, 2010

Right off, I wanted to let everyone know we are going to have a special fast tomorrow. For those of you who are able, or who would like to join in, we welcome you. We need all the help we can get. Ashley has been asking, as I mentioned earlier, about a blessing of release. Tonight was terribly difficult for her. She was so weak, she couldn't get off the bed to use the bathroom. She couldn't sit herself up. She couldn't eat. She tried to color for a while, but didn't have the energy to hold the crayons. She tried to watch TV, but was so tired, she kept falling asleep. She had problems with diarrhea. She was miserable in every way. She cried and pleaded with me, asking if she could have a blessing of release. I didn't know what to say. I wasn't sure when it was appropriate for such a blessing to be given. Does the person have to be in a mostly comatose state? I wasn't sure. But I felt like the right thing to do would be to fast, to plead with our Father in Heaven, if now is the time for Ashley to be given permission for her spirit to leave her body. She is so ready to be free. One of her biggest fears, when we stopped her sotalol, was that she wouldn't die. She would continue on, day after day like she was. That is what has happened. Her heart thumps and bumps around constantly. I know it isn't in a normal rhythm, but still, Ashley remains with us. Don't take me wrong! I am so thankful for every day she stays with us. I wouldn't trade one minute with my angel. I am deeply grateful we were able to have her for Christmas and New Years. I am grateful she and I have had some delightful time together, while the boys were at school. I am grateful Jason has had some special time at home, with Ashley. What a blessing! But now, it is hard to watch her. She doesn't smile. Her sass is gone. Her laugh is gone. Her bright sparkling eyes are dull and empty and full of pain. She can't eat. She can't walk. She can't sit up without assistance. I can't bear to watch her suffer so!! I know, as we fast and pray, we will know what to do. We will know if it is time to let our angel go.

Last night, Ashley and I had a very special experience together. Ashley wanted to go to her room. She hasn't been in her room for a very long time. We sat on the floor, looking at her things, talking about times past, about things we have done together. We talked about her school. We talked about her friends. We talked about her projects, which now she is too sick to enjoy. It was a wonderful bonding moment for both of us. I think, for just a minute, Ashley felt like herself. She was reminded of the happy times, when she wasn't confined to her bed. There are so many happy memories. It was nice to forget the bad for a brief moment in time.

Throughout the day, Ashley remained the same. Her diarrhea was better today. She still went, but not nearly as often as yesterday. Her face was very puffy and distended. At this point, we won't increase her lasix, even with increased swelling. Her breathing is fine. I can't even tell you how grateful I am for that blessing, and YES, it is a blessing she can breathe!! She has other issues, but she can breathe. We will monitor her closely for any changes there. The main concern today: weakness. Every movement was a struggle: sitting up in bed, getting up to the bathroom, moving her legs under the blankets. It was awful! I am sure the lack of food is not helping matters. We tried to find even the smallest something she could eat. Jason, bless his heart, made three separate trips to three different stores to find specific food items she requested. He even skipped his dinner, when it was hot and ready, to run to McDonald's to get her an item she had a craving for. What an amazing dad Jason is!! What an amazing husband I have!! I have to say, he is my lifesaver. He has taken over all the errands. I haven't had to worry about a thing. I can't leave Ashley for long, especially with her diarrhea like it has been. For me to go to the store, would be super difficult. Without complaint, he takes care of it all. He takes the boys to and from school. He runs wherever he needs to get things for Ashley, and also, for me. I love him with all my heart!!! We are a team, and we are surviving because we are functioning as a team.

Once again, thank you thank you thank you all, for the emails I have received. I haven't been able to respond to them, but they are so helpful!!! When I have a moment of weakness or despair, never fail, in my inbox will be a note of encouragement and love. Then I am reminded that I am not alone. I am reminded I can keep moving forward. Love you all!! Please know how much everyone means to our family!! We are so blessed to be surrounded by such good people!!!

Thursday January 14, 2010

I am so sorry for the lack of update over the past 24 hours. Last night was a very hard night for Ashley. She was feeling very poorly at bedtime and I couldn't take the time to blog. Yesterday turned into a nightmare. While her belly stopped hurting so badly, and her nausea subsided, she had horrible diarrhea. Every time she ate anything, within a few minutes, she would have to leap out of bed and barely make it on the potty before the diarrhea hit. I can't even count how many times she went to the bathroom. I was frantic by bedtime. I didn't know how to make it stop. We tried everything the nurse had encouraged us to try. You can imagine with all the diarrhea, Ashley didn't eat a thing all day long. She tried, but what fun it is to eat when as soon as you are finished, you have to run to the bathroom. Just an awful afternoon. By bedtime, Ashley looked awful. Her face was really puffy again and pale. I haven't seen her so pale for a few days. I didn't want to increase her lasix, not with so much diarrhea. We don't need her to get dehydrated. I am pushing fluids, so that may be the reason she had more fluid on board last night. At least her breathing was alright. What a blessing!

So bedtime came, and poor Ashley was too miserable to fall asleep. I was so tired by then, and I had a hard time interacting with her. Around 12:30 she wanted me to read to her, but I was too tired. I couldn't stay awake. After that, she went to the bathroom two more times. At 4:30, she woke me up and had to go again. She was so upset at that point, she couldn't go back to sleep, so she turned on the TV. I stayed up with her for a little bit, but exhaustion got the better of me and I crashed. I would drift in and out of sleep, checking on her. I have no idea when she fell back to sleep.

As you would guess, I felt pretty yucky this morning. I did not want to wake up to get kids ready for school, but I am still mom to them. Jason didn't have a good night either, so he got up late. He did help me all he could, but we were both dragging. Ashley didn't wake up until close to 9:30. When she did, she was in pain. Her whole body hurt. Her stomach was a mess. It took a while to get her settled and at least a little comfortable.

Then we had another horrible experience. She was so desperately hungry, she begged to eat a little bit. We put our heads together, thinking of everything we could for her to eat. She finally settled on something and I fixed it for her. While she ate, I exercised in the living room. Shortly after I started, I heard her yell for me. The dang diarrhea hit her so hard, she wasn't able to make it out out of bed fast enough and she had a little accident. It wasn't major but oh how she cried and cried and cried. She was embarrassed and said she felt like a baby. I hurriedly cleaned things up, washed her down and got her back into bed. By then, she was exhausted. The whole ordeal took its toll on her in every way. Physically. Emotionally. She hit the bottom and she cried for a long time. I told her it wasn't her fault. Not at all. It is her protein losing enteropathy, worsening as her heart continues to fail. It was awful!!

Oh how she wants this suffering to end!! She asked me about having a blessing of release. I didn't know what to say. I know Bishop Corder spoke to Jason and I about that not long ago, but it wasn't something I wanted to think about. Not yet. Perhaps we are coming to the time when we need to revisit that idea. I can't bare to watch her lie day after day like this. She is so unhappy. She is too sick and weak to do anything. It gets unbearable!! And I am torn in half because I am scared to be without her. Every day for the past 12 years, my life has centered around Ashley. For the past 6 months, I have been by her side constantly, caring for her every need. I have no idea what I am going to do when she is gone. Man that sounds selfish. I would never want her to continue suffering from day to day. Never! But I fear the hole that is going to be left. It will never be filled. I have to go on with my life. I know the time for fasting has come again. We need to have another family fast. Ashley wants that. She asked me about a family fast two days ago. I haven't been able to fast thus far because of my stupid antibiotic. But soon I will be finished. We have so much to fast and pray about. I could pray for the next ten years and still not feel like I have prayed enough. The only person who knows what is in store is Heavenly Father. Oh how I need his guidance!!! We all do. I trust in Him. I know He is with Ashley. I know He is watching over our family. We have to keep trusting in Him. And we will survive this horrible time in our lives.

I better finish now. Ashley needs her mom. Thank you all for everything!! Thank you for supporting our decisions. Thank you for all the emails, notes, cards, etc. They keep coming, and every one touches my heart, touches Ashley's heart, helps us to keep moving forward! May you all have a wonderful night!!

Tuesday January 12, 2010

Today was actually a fairly good day. Ashley didn't have any major heart episodes. She told me she felt her heart racing while I was fixing dinner, but I didn't know she had a problem until we were talking at bedtime. The most bothersome problem right now is her stomach. She was nauseated all day long. It was a chore finding anything she felt like eating. We increased her flagil to three times a day in hopes that might calm her digestive system down. I am also going to pull her morphine for a couple of days. When we started using the morphine with more frequency previously, she got very sick to her stomach. When we stopped the morphine for a bit, her stomach immediately improved. Where she isn't having respitory distress, I don't feel bad about switching to hydrocodone. I can still give that with the ativan, which she does need. Other than that, the day was quiet. Ashley didn't sleep as much today, and tonight she is very tired. But overall, it wasn't a bad day.

So it looks like we might have the funeral in Burley. I appreciate all your support for our decision. I was so worried I might offend someone or make our friends here feel bad. But it would be much easier to have the service there, in my own building, where I went to church my whole life. We haven't spoken to Bishop Corder about our plans yet. We will do that tomorrow. I was also thrilled to find out a very special friend of our family has agreed to be one of the speakers. He is a delightful, compassionate man and Jason and I know he will do a wonderful job!! (0: I originally wanted to ask my father to be a speaker, but it was too close to home. I won't torture poor grandpa like that! (0: And I know our friend is the right person.

It is late and my sweet angel is going to the bathroom yet again. I need to help her. Thank you all so much for your continuous support. The freezer meals have been delicious! The notes and comments and emails have been super uplifting. We wouldn't make it without the love and support of so many dear friends!

Monday January 11, 2010

As expected, Ashley's heart episode last night weakened her greatly. She was awake briefly this morning to take her medications, but promptly fell asleep for a couple of hours. She was too tired to eat. She was too tired to talk. All she wanted was to rest. Her stomach was a mess all day long. In fact, this afternoon, she felt like throwing up. The one thing we found she can at least drink is peppermint tea, which she drank four times over the course of the day. Tonight she tried a piece of bread, but that was the extent of her meals today.

This afternoon, she was again, just worn out. Her tummy was paining her. She felt awful! When she awoke around 5:00, she was puffy and working to breathe. I should have given her lasix around 4:00, but she was sleeping so soundly and peacefully, I didn't wake her. I think sleep is a huge blessing for her. When she sleeps, I know she is at peace. When she is awake, she struggles in every way.

Tonight she wanted a bath. We attempted a sponge bath, but it failed miserably. She got very upset when we tried to wash her hair. I ended up putting her into the bathtub. Miraculously, she was able to get in and out. I actually put her portable toilet by the tub so when she got out, she could sit right down. The toilet is bigger than the wheelchair and she can dry herself off better on it than in the wheelchair. The bath exhausted her. She promptly crawled into bed and fell asleep for another two hours. She would wake up periodically to make sure I was near. She just wanted me to sit and hold her hand and stroke her cheek. It was a very special moment for both she and myself. Bless Jason's heart. While I sat with her, he took care of our troopers. They had a wonderful time hanging out with their totally awesome dad. (0:

Right now it is 12:06, and Ashley is awake. She was finally able to take her meds. Her stomach is so gurgly and sick, she asked her dad to come give her a blessing. I really hope her stomach will settle enough she can sleep. We were up until after 1:30 last night. I know she is tired, as am I. I am desperately hoping we can get some better sleep tonight.

Nancy and I had a talk a few days ago. She encouraged Jason and I to start planning Ashley's funeral. She said everything we do ahead of time will make things easier when Ashley actually dies. That is what we have done. One of our biggest concerns is where to have the funeral. We originally thought we would have the funeral in Nampa. We don't want to bury Ashley here, but rather want to bury her in the Paul cemetary, by my grandpa and great grandparents. There is a plot available, right next to my great Aunt Ruth, who was also disabled for most of her life. The question is, do we have the service and viewing here in Nampa, and then drive to Burley immediately afterward for the burial? We have so many people to consider in the planning. We have many friends in Nampa. But we also have tons of family that would be coming from Utah and Wyoming. Our grandparents on both sides of the family would be best served by a service as close to them as possible. I know for a fact my Grandpa Morgan is not well enough to make the trip to Nampa. Then we have to consider all the children. Plus, we are using Rasmussen Funeral Home in Burley. We will have to travel there anyway to finish planning with Jeff. If we had the service in Burley, it would be easy to plan the viewing and funeral and burial, without figuring out how family would travel from one place to another. I know we must do what we feel is right. But what that is, I am not certain. So friends and family, let me know what you think. Would anyone be offended if we didn't have the funeral in Nampa? I wouldn't want anyone to think if we did everything in Burley, that we don't love everyone here. It would be a decision based on what is best for our family. Please, please, let me know what you all think.

Hope everyone has a great night! I can't wait to sleep!!!

Sunday January 10, 2010

So this is going to be a really quick entry. Ashley is having a really bad night. I was so worried we might lose her. She started into an arrythmia which caused her horrific chest pain. She couldn't breathe. At the time, she was in the living room, with her brothers, and was so weak, it was difficult to get her back to the bed. I sat by her, feeling totally helpless, praying constantly that if it was her time to go, she wouldn't be in pain. It would be a peaceful passing for her. She wanted me to rub her chest, and I did. Jason got the boys to bed and then came in by us. Right now, she is still having pain in her chest, but her breathing has calmed down. Her heart finally stopped thumping and jumping, but it is beating weakly. It was scary! I have no idea what this night will bring, but I know no matter what, we will get through the night. Lots of praying to do!!

Last night was very long. Ashley and I were up and down and up and down. Jason was also. We were all so tired this morning, we didn't wake up in time for 9:00 church. Jason was planning to take the boys so I could stay with Ashley. We didn't make it. But it was alright. I taught the boys their lessons from Primary. We had a lovely evening together. Ashley was able to join us for a little bit, before she had the problem with her heart. I was grateful for that time to study the gospel as a family. The spirit was strong. I felt my spiritual cup fill, and I needed it. We all needed it.

The day was a difficult one for Ashley. She has been super tired and emotional all day long. No appetite. Feeling very down. I had a hard time finding ways to keep her happy. She cried over absolutely everything. Then she would apologize for being so upset. She was worried we would be angry with her because she was so emotional. Oh how that broke my mom heart!! I assured her, her dad assured her, her brothers assured her, we will love her NO MATTER WHAT! No matter how much she cries or how grouchy she feels, our love is unconditional. I hope she never forgets that.

Better go now. She is still very ill and needs her mommy. Thank you for everything! I have had numerous emails and well wishes. They all mean so much! Please know, even when I can't respond, I am grateful to everyone. My burdens have been lifted so many times because of the love of good friends. (0: Much love to you all!!!

Saturday January 9, 2010

Sorry for the lack of blog last night. Ashley was upset and needed her mommy. I didn't want to take the time to blog. When she calls, I answer. (0:

So new developments: we now have a bedside commode! YEA! It has been a huge blessing to Ashley. It fit right next to our bed, hidden by our dresser, so it feels a little more private. Now all Ashley has to do is step off the bed and turn around and she is on her commode. Nancy was our hero. She had it here on Friday morning. I can't tell you how much easier it is for Ashley. She was just thrilled not have to make the walk to the bathroom. I was thrilled too. Walking is just too hard for her.

We are also working on getting the supplies necessary for sponge baths in bed. The bathtub is also too difficult now. Nancy said there are special washcloths and shampoo we can get from Norco. She is bringing them on Monday. I can't wait for that. One more way we can conserve her dwindling energy.

Yesterday was a fairly good day. Ashley remained the same throughout the day. We completely stopped her morning dose of sotalol, so I wasn't sure what to expect. Fortunately, nothing new occurred. Her swelling remained the same. Her heart did not have any strange rhythms that I noticed. At bedtime however, she was feeling pretty yucky. She wanted me to sit with her, watch a movie, and stroke her arm. We ended up watching Swing Vote. After the movie ended, she was still feeling anxious, so we read from the New Era for another hour. I always love reading with Ashley. Not only did we read several inspiring stories, but it was a great distraction. She was able to relax after reading and fell asleep. It was late, but she slept all night. No pain. No trips to potty in the night. It was peaceful for both of us.

Today has been another good day for Ashley. She woke up looking pretty darn good. No facial swelling like I expected. Her breathing was fine. She had pain in her arm, the one with the clot, but only wanted advil for pain. I didn't give her morphine or ativan until this afternoon. She even joked with her dad a little. I haven't seen her do that in a very long time. It was nice to see her spunky, sassy side. She laughed at a program on TV. Jason and I sat outside the door and listened to her laugh. It was a wonderful moment for both of us.

Her good was short lived. As the evening wore on, Ashley began to decline. She started feeling sick to her stomach. She tried to throw up, but only heaved around. She didn't eat as much today, so I am sure the empty stomach wasn't helping with the meds on board. After she got sick, I made her some peppermint tea, which helped. She eventually was able to eat a little chicken for dinner. I made her goolash, but that didn't settle well. She ate three bites and was finished. But hey, I will take three bites!!

This evening, she was way tired. Her heart was pounding around in her chest. Her breathing was more difficult. She wanted her morphine and ativan and advil. The dang arm was hurting quite a bit. Fortunately, her back pain over the past couple of days is better. I think the advil is controlling that.

After family prayer, she came into the bedroom, upset. She was worried about tomorrow, and having me gone for church. I am thinking I may only go to church for sacrament meeting, but I am not sure. If Ashley continues to have a bad night, I won't leave her side at all. But if the night goes well, and she wakes up feeling alright, I may go to sacrament meeting only. Poor Spencer, my little straight arrow, was distraught at the thought of coming home after sacrament. He LOVES primary. I told him he could still stay, even if I came home. Preston didn't like that thought, but if I snuck away, they would be fine. I would be there when they finished primary. Anyway, we will figure it out in the morning.

Ashley and I read for a little bit and now we are going to put on a movie. I hope she can have a decent night. We only have one day left on sotalol and then it will be gone forever. This week is just one big unknown. No one can predict what Ashley's body will do. The unknown is very hard for me. That is where trust and faith come in. But at least we have been given two days now where our angel has been more at peace than she has in a while. What a great blessing!!!

Thursday January 7, 2010

Tonight the only word that I can think of is exhaustion!! Total complete exhaustion!! Last night was the worst night yet. Ashley and I went to sleep by about 1:00, but shortly after she fell asleep, she woke up very upset. She told me she keeps having these horrible dreams, where she feels like someone is holding her down, and dreams where Jason and I don't want her anymore. She cried and cried and cried. I talked with her for a long time. I told her about a time when I was a girl and struggled with awful dreams too. My dad gave me a blessing one night, when I was upset. I never again had those dreams. I remember being filled with peace. I told her she could have a blessing specifically for those dreams too. We talked about her praying for the Holy Ghost to comfort her. She has been promised, in her patriarchal blessing, that the Holy Ghost would be her constant companion every day, bringing peace, helping her burdens to seem lighter. After we talked, and I had stroked her arm for a bit, she was finally able to rest. She rested for a little bit, but ended up needing to use the bathroom a couple of times after that. She woke up at 4:00 and needed some pain medication. I felt like I was up most of the night. Both she and I were bone tired. I had a hard time getting up to get the boys ready for school. Jason helped me, and together, we got them to school on time. Thank goodness for him! I felt like I was in a fog.

The day has been good for the most part. Ashley slept through the morning. When she woke, she was in horrible pain again. Her back is so swollen, I am sure the pain is from the pressure of the extra fluid. I got her settled, fixed her some food, and then she slept again. Jason came home shortly after lunch. I was so tired by then, I couldn't keep my eyes open. He helped get Ashley settled and happy, and then shut the door so I could rest. I am so glad he helps me get the boys to and from school and then helps keep them happy and busy after they get home. I don't have the energy or strength to take care of them like I normally would. They need attention too. And Jason rocks at keeping them entertained. I couldn't do it without him.

Tonight, Ashley was very weak. When she tried to take a bath, it was all I could do to get her out of the tub. She was so tired and short of breath after struggling to get out of the tub and get dressed, she promptly fell asleep for another hour. She and I talked tonight about getting her a bedside commode. Nancy suggested that option a few days ago. Initially, Ashley was not in favor of that. But tonight, it was too hard. She asked if we could get her one tomorrow. I emailed Nancy and as soon as she comes in the morning, she will bring the commode. We have the best hospice nurse in the entire world!!

As for myself, I am spent. My whole body has been complaining. Tonight, I felt that feeling of panic again. I have to keep myself going. I didn't see how I would. My body felt sick. My stomach was in knots. I had a headache from Hades. My ear is feeling better, but I still have those sensations of being on a rocking boat. I know I need more sleep, but when to sleep, I don't know. I try to sleep when Ashley does, but there are always things to be done in the house. I have to keep up on that too. Jason helps a lot. I am so grateful he does, but it isn't enough. He needs time to relax too. I don't feel like I can exercise right now. I have to be by Ashley constantly. Jason will help her to a point, but then, because she is a 12 year old girl, she needs her mom. I have to be strong, and I don't feel like I am. I feel like I am falling apart. I went into the bathroom tonight, and prayed for a long time. I asked Heavenly Father to help me get through this. I asked for peace, for my own aches and pains to subside so I would feel like taking care of Ashley. While I am still completely fatigued at this moment, I do have peace. I know I can do this. I will be strong for my angel. She needs me, and I will be here, even if I am crawling to the bed!!! I know with prayer and constant faith, Heavenly Father will bless me. If we were too weak to handle this trial, then we wouldn't have it! I believe that with every fiber of my being.

Really quick, we ate the chicken and rice casserole tonight for dinner. It was delicious! So to the wonderful sister who made that dish, thank you from the bottom of my heart!!! And, I want the recipe! My kids all ate it. I was in shock!! Ha ha ha! (0: Much love to everyone! Thank you for your notes and prayers!! I can't respond to everyone, but know they mean so much!!!