Monday December 28, 2009

Last night was really rough. Ashley was very sick. She was horribly swollen all over her body and struggling to breathe. On top of all her aches and pains, she was upset, and she didn't know what was wrong. Every little thing made her cry. She and I tried to play a couple of games together, and it was hard to do that. She got upset over the smallest things, and then she would apologize over and over for crying. I tried to explain to her that it wasn't her fault she was having a hard time controlling her emotions. She had earned the right to cry all she wanted! I assured her it was good and healthy for her to get her frustrations out. She felt awful all day yesterday. I had given her several doses of morphine and ativan through the course of the day to help her respitory distress. Ativan definitely helps control her anxiety in those moments when she can't breathe, but I think it makes her more emotional. It is hard to tell. She is getting sicker, and with how awful she feels every day, I am sure that contributes to her sadness.

With how upset Ashley was, she needed some distractions to help her relax. We tried walking around the house. That failed miserably. She was too weak and short of breath to enjoy that. We tried playing games. As I mentioned earlier, that failed also. We tried watching movies. That helped a little bit, but it was hard for her to decide what she wanted to watch and she got upset that she couldn't pick. In the end, that didn't help either. The thing that finally helped a little bit was looking at various Nintendo DS games online. She decided she wanted to trade in a couple of her games that are too hard for her to play. We stayed up until after 2:00. She woke up three times after that. At 5:00 a.m., she woke me up and was really working to breathe. I gave her another dose of morphine and ativan. She finally fell back to sleep, but it took a while. Like I said, it was a very rough night. Thankfully, Jason was able to stay home for a little while this morning. Ashley and I slept in for a little bit, and he took care of the boys. I was glad to get a little rest. And I was so thankful Ashley was able to sleep in for a while. She was so exhausted! And I knew we had friends driving up from Burley today to come see her. I wanted her to be as good as she could be.

Nancy came mid-morning. She was really concerned about the swelling, and how hard, even at rest, Ashley was working to breathe. I was too. We spoke to Dr. Etheridge about what was going on. She wants to increase Ashley's lasix. We aren't going to wean Ashley's sotalol this week. Dr. Etheridge felt with the new symptoms occurring, it would be best to wait a few more days before we pull another med that might cause more chaos in Ashley's body. I was worried Ashley might get upset to find out we couldn't wean her as quickly as she hoped they would, but she was okay with the explanation.

Ashley was able to visit with her best friend Kiara for a while this afternoon. They played with their DS's and had a great time. It was so nice Kiara and her family were able to come. After Kiara and her mom and brother left, Ashley was exhausted. I had to help her into bed. She needed more medicine by then. Her whole body was hurting and she couldn't breathe. She was emotional all over again. Fortunately, my mom and sister arrived in the nick of time. They ran interference with the boys while I helped Ashley take a bath and crawl back into bed. She was able to sleep for a while. Thankfully her rest was enough to take the edge off of her aches and pains and extreme fatigue.

Tonight she has been in bed all evening long. She is too tired to do anything but lay. Her legs are still really swollen, as is her belly. I am just praying she will be able to have a decent night. She desperately needs sleep. If she can't sleep tonight, I am going to ask Jason to give her a blessing. I wanted her to have one last night, but she didn't want one. I knew it would help her, but it has to be her choice to ask for a blessing. We will pray for a good night.

I had to interject here about the morphine. As I mentioned in a previous blog, she wasn't tolerating the morphine. It made her very ill. Miraculously, and not by accident I know, her body has been able to tolerate the morphine over the past few days. I have no idea why. Nancy has no idea why. Dr. Etheridge has no idea why. I know it is a direct blessing from Heavenly Father. Morphine works well, in combination with ativan, to control respitory distress. There isn't much better, not for Ashley. The two drugs combined help her to relax and breathe better. I am so thankful she is blessed to be able to have the morphine. I don't know what we would do without it. I know Heavenly Father is watching over her.