Friday February 26, 2010

Today was another long day. Seems like I say that all the time now. But the days seem so long at times. Last night didn't help. Ashley and I had a horrible night. Poor Jason did too. We were all tired and grumpy this morning. Ashley's problem wasn't the diarrhea. She couldn't breathe well. It was awful! She finally gave up and turned on the TV shortly after 6:30. I was so tired, I fell back to sleep for a little bit, but I know she didn't. The boys were thankfully very cooperative. I wasn't in the best mood, and it was so nice to have them get ready without too many reminders. Yesterday, Austin woke up searly. When I came out into the living room at 7:45, he was dressed and ready for school, coat and all. He had laid out Spencer and Preston's backpacks and shoes. He had breakfast on the table, with bowls and spoons for everyone. We were like, "Who are you and what did you do with Austin?" Ha ha ha ha! For those of you who know Austin well, you are really laughing right now. He is NOT a morning child. It usually takes lots of reminding to get him out the door on time. Anyway, we are so proud of our boys. They are amazing!!! When I need them to step up and help out, they do. What troopers!!! (0: Jason and I can't praise them enough for how well they have done. Their help this morning lightened my load considerably!

This morning, I felt so overwhelmed. It is desperately hard to see Ashley continue to decline. It is desperately hard to see her struggle to breathe, to see her so weak and forlorn looking all the time. Her color is awful. Her eyes are droopy and lifeless. Her legs hurt like heck. I know she suffers greatly!!!! Through it all, she continues to bear her burdens with grace and dignity. She is not bitter. She is not angry. She doesn't complain. She will cry, but only because of the intense pain and discomfort. I don't blame her there! I would cry too!! I know Ashley is dying. I see little pieces of her disappear every day. This morning, the grief was unbearable! I felt sick and tired to boot. I was a mess. I didn't feel strong enough to handle it all. It was like I had a 50 pound weight on my heart. I knelt down in the living room, and poured my heart out to my Father in Heaven. I prayed and prayed and prayed like I haven't prayed for a very long time. As soon as I closed my prayer, I felt the weight lift from my heart. I felt the fear and the grief slither away. I felt peace. I knew, beyond a shadow of a doubt, I would hold up under the pressure. I knew Ashley would be blessed. And I watched the blessings of heaven poured out upon our angel over the course of the day. She was able to breathe a little bit better. She was able to rest. I saw more comfort in her than I have seen in a long time. That wasn't by chance she was able to have some peace. It was a direct answer to the prayer of a distraught mother. How grateful I am for prayer! It works!!

Nancy and I talked again today about how to help Ashley as best we can. The plan is to add an additional dose of lasix in the night time. We are also adding a small dose of morphine in between doses of ativan and hydrocodone. I tried the morphine this afternoon and it helped her breathing to slow a bit. We have to get the fluid under control so she can breathe. We are also going to add immodium to help control the diarrhea a little bit more. We are hoping that will help her so she won't have to get up to the bathroom so much. Bathroom trips take so much out of her. I had to give her a sponge bath today as well. She was too weak and out of breath to even consider sitting in the shower on her chair. It isn't her favorite thing, and it still zapped her energy, but it was easier. Every little bit of comfort we can give, we try to give.

I can't express my gratitude to my Heavenly Father for this day. We were blessed, in many ways. I know we will continue to move forward with faith. I know we will survive!!!!

Thursday February 25, 2010

Sorry for the lack of blog last night. It was not a good night. Between Ashley feeling so poorly and myself feeling extremely tired, I didn't feel like writing. Night time is never restful anymore. It looks like we may need to add a dose of lasix in the nighttime, especially if Ashley's breathing continues to become increasingly difficult. That will mean more ups and downs in the night time. I have no problem with that. But I do worry how hard it would be on Ashley. She is so weak and out of breath, getting out of bed is a huge issue. She will sit up, have to catch her breath, then pain-stakingly climb off the bed to the bedside toilet. She has to catch her breath again. Then getting off the toilet and back into bed takes her breath away again. It is literally all she can do to get up to the bathroom. The more she goes, the harder it is going to become. Lots of praying to do over all this!!!! Praying, fasting, praying, fasting........

Today felt more comfortable to me. Ashley slept most of the day. She woke up, took her meds, tried to eat, then fell asleep for a while. Then she was awake, then back to sleep. It was like that all day long. I haven't seen her sleep so much in a long, long time. The sleeping part is a blessing. When she is sleeping, she is at peace. The pain, the aches, the misery, for just a short time, seem to be at bay. As soon as she wakes, she is miserable and emotional, but to see her resting comfortably, is truly an answer to prayers. The part that was hard today was watching her breathe. When she inhaled, her whole body would shake. I could see she was working hard. Her respirations have increased lately, but today, she was breathing harder than she ever has. As I sat by her, her heart, at times, would beat so furiously, I could feel the vibrations rip through her body. It was scary!! I was so terrified her heart would stop!!!

The other worrisome part was her color. She was extremely dusky and pale all day long. When Jason came home from work, that was the first comment he made, how awful she looked. Her face was more swollen, but it was the color he noticed. I know her oxygen levels are falling. That part is obvious. But we haven't seen her look so pale in a very long time. Not since she had the really bad arrythmia so long ago.

I don't know what else to write tonight. The trial continues. The pain grows. The suffering is never-ending. I have no idea what the next few days will bring to us. I hope and pray, I pray continually, that no matter what happens, we will be able to keep moving forward. Thanks again to everyone for your faith, for your prayers, for your words of encouragement. At times, I don't know how I am ever going to deal with what is to come. It seems so hard. It seems so impossible to survive. But then I am reminded I am not alone. Heavenly Father would NOT give us anything we can't handle. I know we will be blessed. I know soon my angel will be at peace. How she deserves that peace!!!!!! How I pray she will soon be free from her heavy burdens!! It is so difficult to watch her suffer so!!! Lots of faith and prayers at yet needed!!!!

Tuesday February 23, 2010

"No matter how dark the day, the sun will always find a place to shine." I have no idea where I first saw that quote, but it has stuck with me for many years. It is a good reminder that no matter how bad a day seems, there will always be something good. Sometimes you have to look, and look very hard to see the sunshine. But it will always be there. We had to look for sunshine today.

Last night was not restful. Ashley was up and down several times. When she was up at 3:30, she was in pain and fought with diarrhea. I gave her some more medicine, but it took a while before both she and I fell back to sleep. With a lack of sleep once again, we were both feeling a little ragged this morning. Once I get going, I am fine. But poor Ashley was bone weary. She was only up for an hour before she fell back to sleep.

Her appetite was almost non-existant all day long. She attempted to eat this morning, and then again at lunchtime, but food did not agree with her. She ended up feeling very sick to her stomach. Tonight she had no desire to eat at all.

Her legs were awful today as well. They hurt terribly when she has to get up. They hurt when she lies back down. They hurt to move around on the bed. It seems like everything bothers her poor legs. I am so grateful for her pain medications. They offer some relief, and they help her sleep. I have no idea what I would do if I didn't have anything to offer to help ease the pain. I would be in absolute despair!!!!!

Tonight was very quiet. Ashley slept off and on all evening long. She didn't talk. She didn't smile. She didn't do anything but sleep. For a short time, she was at peace. What a wonderful blessing it was to see her relax. It was not a comfortable day for her. Both Jason and I felt on edge. It is so draining to watch her day after day. We have no idea what to expect. We have no idea how long she will be with us. She gets sicker with each passing day. Her suffering is great. At times, our situation over whelms us in every way. We get discouraged. I know Ashley is discouraged. That is when you have to look for the good. We can't sit around crying. We can't let this situation get the best of us. When Jason and I are upset, so is our angel. She can't stand to see us upset because of her illness. What good would it do us anyway to sit around moping and boobing? She is still here and I want every moment with her to be the best it can be. When you focus on the positive, soon your problems don't seem so big anymore. Couple that with faith and prayer, and nothing can get you down. I know Heavenly Father will continue to bless and strengthen all of us.

Monday February 22. 2010

Happy happy birthday to my wonderful sister!! I know I already wished you a happy birthday, but I do hope your day was wonderful!!! (0: This particular sister is a beloved aunt and an amazing person. We are all so thankful for our Tammy!!

Last night was a slightly better night. Ashley was awake three times, but was thankfully able to fall back to sleep without much difficulty. I did give her some medicine at 3:00, and she was able to go until 9:00 without more medicine.

When she woke, her body hurt. She was exhausted. Her belly was a little more settled, and she wanted to eat. Of course, she is never able to eat much. But at least she tried. After she ate, she was so sleepy, she crashed for a short time, until Nancy came. My biggest concern right now is the shortness of breath. It gets worse and worse every day. I was concerned that we might need to max out all the doses of lasix. Nancy felt like instead of going up on the lasix, we need to use ativan and occasionally morphine to help her breathing feel easier. The fact is, Ashley's heart is functioning so poorly, she will lose her breath. Thus, even sitting up in bed, or taking three steps to the bedside commode, completely wear her out. Ativan does help her relax. I am so thankful there is something that might offer her even the slightest relief.

This afternoon was hard. When the boys came home from school, they were rowdy and loud. They did go outside for a little bit. Thank goodness for sunshine! (0: But then they came back in and Austin and Preston started fighting. I was outside, working in the back yard, and didn't realize they were as loud as what they were. Ashley got very upset and started sobbing. Jason was upstairs, and came down to help out. It took us a while to calm her down. She can't handle anything loud. All of her senses are in over-drive. It is awful for her! And she always feels so bad when she gets upset. She doesn't want to get anyone in trouble or be a burden in any way. Bless her heart!!

My darling Jason ended up taking the boys back to the school for a while. He even took them to the store so they could use some of their Christmas money to buy a little something special. They love their dad!! He was a lifesaver tonight. While they were gone, Ashley was able to rest and calm down. Her heart was pounding. Any time she is upset, her heart freaks out. It was such a relief to see her breathing slow and feel her heart stop beating so furiously.

I found out today that my dad is having problems with his heart. The doctor told him it is fluttering and that he needs to have his heart shocked to help it go back into a normal rhythm. My parents will need to go to a cardiologist in Pocatello for further consultation. We were laughing because my dad joked about he and Ashley having "twin" problems. She smiled at that. How she loves her grandpa!! It was kind of special to have a connection with him, although she wouldn't want him to be sick like she is. The smile was nice. I think that was one of the only smiles I saw today. She always looks so sad. We will all continue to pray for my wonderful father. I know Ashley was deeply concerned about him. We all were. I hope he will feel better soon.

I have to send out a few special thank you's once again. There are so many wonderful people who have blessed our family once again. I want to thank my Aunt Peg and Uncle Jim for the beautiful flowers that arrived today. The whole bouquet was so lovely and happy. It brightened Ashley's dreary day right up!! I wanted to thank the Moyes family, and especially Olivia, who made Ashley a very special pillow. It was darling gift, and Ashley was deeply touched you thought of her. Thank you!! And to my wonderful neighbors who left a note in our mailbox this morning. Ashley loves you. It was so thoughtful to let us know, your prayers are with us too. I am so grateful for every prayer!! Prayer is what gets us through each and every day. What a blessing to have such special friends and neighbors!!! Love you all!!

Well, I better go take care of my angel. I wish everyone a heart full of peace tonight!!

Sunday February 21, 2010

Last night was not a good night. Ashley was feeling very poorly at bedtime, and she needed my exclusive attention. I felt pretty rotten myself. I had a headache from Hades, so I didn't want to blog. There wasn't much positive to say anyway. It felt good to put it aside for a little while.

Neither Ashley or myself slept worth a darn last night. Lately, I wake up several times in the night. I know Jason does that all the time. I have no idea how he runs on so little sleep. He seems to handle it, but it kills me when I don't get enough sleep. When I woke up this morning, I felt like I had been run over by a truck. It was the third night in a row with very little sleep, and I was feeling it. Ashley felt it too. She was so tired and her body was hurting and she couldn't breathe. The breathing is getting harder every day. I was so hoping she wouldn't have to deal with that. Unfortunately, that isn't the case. I got her meds down as quickly as I could. She couldn't have any more ativan at that time. I gave her a dose at 6:00, along with her pain medication so she could attempt to fall back to sleep. Then it was hurry hurry to get the boys ready for church. Jason took them today. YEA!! (0: Because I slept in so late, (I didn't get up until almost 8:20), they didn't make sacrament meeting, but they did make everything else. Today I felt envious. I needed the spiritual refill. I miss being at church!! I miss the people. I miss the uplift. I miss the sacrament. I miss everything! It has been a while now since I have been able to attend. I was so proud of Jason for going. He is normally the one who stays with Ashley, so it is different to be the one who goes. But I know they all reaped many blessings for making it to church. (0:

While they were gone, Ashley was finally able to take some more pain meds. She was thankfully able to rest for a while after that. It gave me enough time to take a shower and clean up, prepare dinner, read my scriptures, pray, and read my Gospel Principles lesson for the day. I have to pat myself on the back for that because lately I haven't read much. I feel such a huge difference when I read from the scriptures. HUGE!! My cup is refilled. I feel the Holy Ghost fill my heart. I need that peace so desperately right now. There is so little that makes me happy these days, that gives me peace.

Ashley woke up right as our men came home from church. She was still pretty miserable, and wanted to take a bath. We decided, due to her lack of strength and how out of breath she already was, to put her potty seat into the bathtub and have her sit and shower instead of trying to get her in and out of the tub. It is a little easier that way. She still struggled tremendously to get from the wheelchair into the shower and from the shower back into the wheelchair. Then she had to sit for almost ten minutes in the wheelchair before she had the strength to get back into bed. Then of course, she fell asleep as soon as I helped her get dressed.

We let her sleep for a few minutes while Jason and I finished getting dinner on the table. Ashley woke up right as we started eating and wanted to try some potatoes. I was thrilled she wanted to eat. Jason helped me clean up, and then I came in to lay by Ashley for a while. I should have slept, but Ashley and I ended up watching Starstruck on Disney. I did close my eyes for a little bit when the movie ended, but that was short lived. Ashley by that time, was struggling again and needed medicine and to go to the bathroom. Jason was so helpful this afternoon though. The boys were hyper all afternoon. They were driving us crazy! We sent them outside, but they didn't stay out for long. Jason wanted me to be able to rest so he took them to the school for a while. Bless his heart! He was tired too, but I was so thankful for the quiet time. I hope I returned the favor a little bit tonight. I tried to run interference so he could have Jason time too. We have to keep spelling each other off or we won't make it. I think he does way better than I do. He is such a sweetheart!!! (0:

Ashley continued to have a rough night. When I tried to help her to the bathroom a while ago, she was so weak, she got stuck halfway on and halfway off the bed. She wasn't strong enough to push herself up and I couldn't get her up. Her legs hurt too bad to get down too. She couldn't move them. When I tried to lift her her, she would cry out in pain. It was just horrible!! She was upset! I was upset!! I was about to call Jason for help, but she was finally able to get her leg to move backward enough she could get off the bed. Then I helped her up again. That took all her air and then she couldn't breathe. She turned absolutely blue! I thought she was going to pass out! It scared the tar out of me!! She is still panting now and that happened over an hour ago. Thankfully, it was time for ativan, so I gave her a huge dose. Ativan does calm her so she feels like she can breathe better. What a blessing to have something!! I can't bear to watch her struggle like that. Brings back way to many memories from when she was little. I do hope tonight will be a better night for all of us. We are all feeling weary to the bone.

I am going to shoot Dr. Etheridge an email tonight to ask her what we can do when we max out Ashley's lasix. I have a feeling that is going to happen very soon. The breathing is a huge issue. She can't breathe, and I don't know what we can do when we can't give her any more lasix. It is frightening in every way!! I don't want her to die like that!! I have prayed over and over again that if it is God's will, she will be able to die peacefully, not struggling for every breath. I can't bear that!! I CAN'T! But it isn't in our hands. I do know, Ashley has angels watching over her. I know that. I feel that. If she is given that burden, she will also be given a way to bear it. And we will too. I can't imagine how I can watch that, but if we have to, we will be given the strength to do so. Please, keep praying for us!!! I know Heavenly Father hears every prayer. He will help us. He will help anyone who reaches out to Him in their time of need. (0: Keep up the faith everyone!

Friday February 19, 2010

Tonight will be a very short entry. Ashley has been very ill all night long, and she needs her mom. It was not a good day. Ashley continued to decline. Her breathing was awful when she woke this morning. I could hear congestion in her chest. After she took her morning dose of lasix, she felt slightly better. Her breathing eased a bit. When Nancy came, she felt like Ashley was still working enough to breathe, she needed another small dose of lasix, which I promptly gave her. After talking, we decided the lasix dose needs to be increased, especially at bedtime. So now, I will give her 2.5 mL morning and afternoon, and 3.0 mL in the evening. We also decided to increase her ativan and hydrocodone, giving her the biggest hit at bedtime. The hope is to help her sleep more restfully through the night. Last night Ashley woke in horrible pain. I had to give her pain medicine to help her get through the night. Her legs are so bad! I don't know what to do to help her. The pain medication only helps a little. Every time she gets up, her legs ache so much, she will get back into bed and cry. Heat doesn't help. Ice doesn't help. Massaging them doesn't help. I can't think of anything worse than never-ending pain. If she continues to be in pain, Nancy told me to increase every dose of hydrocodone to 6 mL, versus giving her that dose only at bedtime. I can also add morphine, which Ashley doesn't want. It makes her so sick to her stomach. She doesn't need that right now at all!! It is so discouraging to watch her suffer so!!!

Tonight Ashley went into another arrythmia. She got up to use the bathroom, and upon getting back into bed, she turned absolutely blue. I could see her panting, so I asked her if she was alright. It is normal for her to catch her breath, but I could see she was really struggling. I felt her heart and it was going fast, then pausing, then going fast, then skipping and pausing again. It was beating so furiously, I could see her chest jump with each beat. It was scary! I gave her ativan to help calm her, and then sat by her while Jason, bless his heart, finished scripture and prayer with the boys and helped them to bed. That was all she wanted. To be held.

When Jason came in to the bedroom, she asked him for a blessing. At that point, she was still panting and very upset. Jason always gives such beautiful blessings!! Tonight was no exception. As soon as the blessing was finished, Ashley relaxed. Her heart stopped jumping. She was able to catch her breath. I could feel peace fill the room. It was a miracle. I have no doubt, Heavenly Father is watching over our angel. He loves her. He knows her every pain. He is so proud of her, and as long as she is with us, He will lift her burdens.

Thursday February 18, 2010

I can't believe in only a week February will be over. Wow! It seems like yesterday it was the beginning of a new year, and now we are only a few short weeks away from spring break. How time flies when you are having fun! Of course, "fun" is not the word I would use for our situation. Nothing is fun. It is about survival. That is what we do. We survive from day to day, from hour to hour, and at times, from minute to minute.

Today was one of those days. When Ashley woke up this morning, her entire body was a mass of aches and pains. She had lots of swelling in her back. The swelling was so bad, she felt like she had a big lump. It was horrible! She was working to breathe, and after struggling to get out of bed to the bathroom, she had a complete meltdown! Thank goodness for pain and anxiety medications. I gave her a big dose of both, and in a short time, she was able to fall asleep. I can't tell you how relieved I was to see her relax and rest. What a blessing!!

Throughout the rest of the day, Ashley was miserable. Her legs grow worse every day. This evening, she could barely stand on them. I had to hold her up. The weakness is one thing, but when they hurt her so badly, that is another problem altogether. After she stands on them for even a couple of minutes, they ache and pain her so much, she will sit and sob. I wish she didn't have to use them at all, but how else can she get up to the bathroom? I suggested we move her bedside toilet right next to the bed, but that upset her. She didn't want to do that. But we may not have a choice. If it keeps her from using her legs, I think it would be beneficial.

Eating was a complete bust. Ashley's poor stomach hurt for most of the day. She tried to eat a couple of times, but found the food did not agree with her. I do hope tomorrow she might be able to get a little something down. I always worry all the medications she takes will upset an empty tummy more than a full one.

Our angel is so ready to return to her Heavenly Father. Her suffering grows more intense every day. She has been so brave! I couldn't be more proud of her!! I know she feels like she isn't enduring this trial so well. Bless her heart!! But she is. She is so strong. I do hope she won't have to suffer much longer.