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:
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