Wednesday December 30, 2009

I have to say, the past couple of days have been wonderful. How grateful I am that my dear mother and sister were able to come stay with us. I feel like I have been on a mini vacation. Jason and I have had several opportunities to run errands together. We were able to go out to lunch yesterday. It was so nice to spend some time alone. We haven't had that opportunity for a very long time. I was grateful Ashley felt comfortable enough to stay with mom and Tammy. She won't do that with just anyone. I have had other kind people who have offered to stay with her while I ran to the store. But with how sick Ashley is, she upsets easily when she isn't with someone she feels comfortable with. She cries at the drop of a pin and understandably so. I have to say, it felt good to be able to leave the house with Jason and not worry if she was crying. I had forgotten just how amazing it is to be with Jason, and laugh and not be worrying. It was a blast for us.

As for my dear angel, she has remained the same. Her feet are still horribly swollen. Her legs are swollen, as is her abdomen. For some reason, today her arm, the right arm to be exact, was also distended and sore. I really thought we were gaining ground with the right arm and the clot. Today, it didn't appear we got anywhere. She woke up in the night last night complaining it hurt really badly. When I offered her medicine, she declined. She told me she wanted to change sleeping positions and go back to sleep. We shuffled her pillow mound a bit, and thankfully, she was able to sleep again. Today she did take some pain medication, and it took the edge off a bit. I will ask Nancy tomorrow what she thinks about the increase of swelling in that arm. Not that we will change anything, but just for informational purposes.

Ashley's breathing has been good over the past couple of days. Even with the fluid retention, she isn't working to breathe. I feel the increase in her lasix has, for now, helped control the shortness of breath. We still have some room to move on her lasix dose. Right now, she takes 15 mg in the morning, 20 mg in the afternoon, and 15 mg at bedtime. We can go as high as 30 mg three times a day. I do hope we don't ever have to give her that much medicine. That scares me to death! Who knows what her potassium levels would do then, even with high doses of aldactone?

Ashley's emotional state hasn't been good. We have seen her smile only briefly. I know she suffers so much! She asked me last night when we will cut her Sotalol. Sotalol helps control arrythmias. That is the whole reason she takes it. Because of the high dose she is on, we can't cut it quickly. It has to be done slowly, over the course of a few weeks, from what I understand. I spoke to Dr. Etheridge about it a couple of days ago, and starting next Monday, we will cut the morning dose for a week, and then cut the morning dose again for another week. Then we will focus on cutting the evening dose, etc. Ashley wants to start weaning now, but Dr. Etheridge wanted to wait a week to let her body get accustomed to the lack of metoporal. I pray she can be patient. I know she wants to be done with this broken body. She is so miserable!! Even Mom and Tammy saw how unhappy she is. She did ask me if there was a chance, even after omitting sotalol, she could still stay like she is and not die. I admitted to her there is always that chance. Heavenly Father has an appointed time for her to go, and she won't go until He is ready for her to return to Him. I do know, if she remains with us for a time, He will bless her to carry these heavy burdens. She will not be left alone. We will all have the strength to keep her going, to comfort her, and strengthen her. When you think you can't take another step, you can't face another problem, you can't go one more day, that is when the angels come to bear you up. They come in so many forms. This week our angels came in the form of dear friends, (the Badger family whom we love with all our hearts), and my wonderful mother and sister, who enabled Jason and I, and the boys, to feel normal for a bit. These days, nothing is ever normal, but just for a little while, we were able to rest a bit from the cares of the world. Now we are all refreshed and ready to face another week. I am so proud of our sons. They have been patient and loving and kind. We still have our moments of contention, but they have been angels too. So many blessings!! I am so grateful for the love and prayers of so many!! (0: I am grateful for the angels.