Monday December 14, 2009

Sorry for the lack of update yesterday. It was a busy day, and by the time I had time to blog for a bit, Ashley was too sick and needed me. Yesterday was actually a fairly good day. These days, Sundays are always such a bright spot. I love the spiritual refill. I need it. The boys need it too. We enjoyed church very much. Ashley felt about the same most of the day. Her stomach didn't bother her quite as much. Her stomach continues to get better. She still fights with nausea and diarrhea, but it is lots better. Thank goodness for Flagil.

Last night, her biggest problem was her breathing. We discovered yesterday that she had gained five pounds in three days. It is not healthy weight. It is water weight. I saw it yesterday. Her face was more swollen. Her hands and wrists, feet and ankles were more swollen. Her stomach was horribly swollen. I gave her a slightly larger dose of Lasix last night, hoping that might help move a little more water off her before bedtime. She was struggling enough last night, she wanted morphine and ativan. Ashley also was struggling with itching last night. Around her lower back and down her legs, it was awful. So, we tried a dose of benedril. Man, with all those drugs on board, she was like a zombie. Surprisingly, she didn't fall asleep as well as I thought she would. We watched the Nativity Story until after midnight. I fell asleep right before the movie ended. She woke me up half an hour after that to ask for help getting to the bathroom. She told me this morning she laid awake for a while last night, even after I had helped her. Even with all those meds on board, sleep was still hard to attain.

This morning she slept in for a long time. My visiting teachers were coming at 10:00. I thought Ashley might sleep clear until they came. She woke up at 9:45, so we had enough time to get her some breakfast and for her to take her meds. She didn't feel like visiting while Sara and Jaymie were here, so she stayed in bedroom. I was grateful she wanted to eat breakfast. I figured with the rough night she had last night, she might wake up feeling awful and not want food for most of the day. But thankfully, she did want something to eat.

So throughout the day, she remained about the same. She was still really puffy all over. When the nurse came today, she wanted me to bump all three doses of her Lasix up. We are now at the max dose she can be at without consulting the doctors in Salt Lake. I don't know what will happen if the higher dose of Lasix doesn't keep the fluid off. That scares me to death. But we will cross that bridge when we come to it. For now, we will see if the higher dose helps her.

Tonight she just plain felt awful. Her body was aching all over. Her stomach was hurting. She was having arrythmias. It was hard for her to breathe. She had been in bed most of the evening, but wandered out in the kitchen while I was doing the dishes and sat with me for a bit. I could see in her eyes how poorly she was feeling. She finally broke down and confessed she needed some meds to help calm her down and take the edge off. She is in bed now, looking very sleepy. I am really praying she can rest tonight and that her pain will subside. Just one day at a time. Lots of faith and prayers that she can carry these burdens that are hers to bear. I am so grateful for the knowledge that someday our little angel will be freed from her earthly burdens, and be in a beautiful world, where she can be at peace and rest from the cares of the world. Isn't the gospel of Jesus Christ such a blessing and a comfort to us!!! (0: Isn't it wonderful that we know what will happen when she passes on to the next life!! Isn't is great that our family can be forever!! I am so grateful for this knowledge!!