Friday January 22, 2010

Do you ever feel like you are in the middle of a terrible storm? Several years ago, that happened to my family. We were on the way home from Utah and had just passed Tremonton, when we got into a terrible snow storm. The wind was howling and the snow falling quickly. Before we knew it, we found ourselves in white-out conditions. We couldn't stop for fear someone would not see us and hit us. We had no choice but keep moving forward. My dad was driving at the time, and I remember having complete faith in him as he guided us through the storm. It was so frightening, not being able to see. But our prayers were heard that night. We were able to get through the storm, to safety. I know we were blessed.

In a way, that is how I feel now. I feel like we are in the middle of a terrible storm. We can't see. We can't stop on the road. We have no choice but to keep moving forward, constant prayers carried in our hearts. We have to trust in someone who can see, who knows the path and with faith, will guide us to safety and peace.

Today was a day of peace. This morning, everything seemed to be in balance. Ashley was comfortable. I won't say she wasn't miserable, but her pain was under control. Her stomach was not hurting. She was able to go three hours without diarrhea, which was a huge blessing. She was able to nibble on a little food. Her face looked less swollen and her color was alright. When Nancy came, she thought Ashley looked comfortable too. At this point, that is our goal, comfort. I always rejoice inside when Ashley has those choice moments where she isn't suffering. The hard part is, we never know when those moments will go away. She may be having a comfortable day, but in a matter of minutes, could go the other way. She could have another major arrythmia, and be in agony, or be taken from the earth. There is no textbook for my angel. There never has been, and sometimes, that drives me bonkers!! But at the same time, this whole experience is part of something greater. Our wonderful Father in Heaven has always had a plan for Ashley. He knows what we don't. I have great faith, if we trust in Him, we can move from one agonizing day to another, and not fear what may happen in that day.

Tonight, Ashley remained comfortable. I made homemade chicken and noodles for her, at her request, and she ate two bowls. Unfortunately, the stupid PLE kicked in with a vengence, and she ended up having diarrhea afterwards. At this point, we know it will happen and we deal with it. She told me she would rather eat what she wants, and deal with the diarrhea, than to avoid the food altogether. Thankfully, the nausea has been at bay for a couple of days now. I pray that stays away. There is nothing more agonizing that feeling sick to your stomach.

What the next few days will bring, I have no idea. Nancy and I talked today about Ashley's pain medications, and what I should do should she go into another awful arrythmia. At this point, again our goal is comfort. We discussed using a little morphine, in addition to the hydrocodone and ativan. I haven't used morphine for a while now. The hydrocodone is working well, and Ashley prefers it. Nancy said if I have given her the highest dose of hydrocodone, and Ashley is in an arrythmia, and in pain, I can give her a little morphine to help ease her discomfort. It is a little scary for me to think about those arrythmias. They are frightening in every way! But we have to be prepared. I can always call Nancy, should something like that come up, but I need to be prepared to give Ashley more medication than would normally be necessary. I need to be prepared, should Ashley decline enough she is in a semi-comatose state, and we have to control her pain. It was a hard discussion. I hope we don't have to face Ashley like that. But it isn't up to me. Faith! Faith! Faith! That is what is it going to take to keep moving forward! (0: