Yesterday was just another fair day. Ashley was tired again from the moment she got up. She felt a little more out of breath and didn't eat hardly anything for most of the day. She did go with me when I made a brief trip to the store. When we got home, she was exhausted and spent the rest of the night laying in bed. My sister was able to bring her boys over for a visit. That brightened Ashley's spirits a bit. But at bedtime, it was all she could do to crawl into bed. I did give her ativan with the morphine last night, to help her relax enough to sleep.
She looked awful when she woke up this morning. Her oxygen fell off in the night and she woke up flat. When she lays flat for any length of time, her face gets very puffy. She has a harder time breathing, and her color looks bad. That is directly related to how her heart was fixed when she was two years old. We have dealt with that issue for a number of years now. In fact, at the age of 5 they ordered a hospital bed for her to keep her upright at night so she could breathe better. She still has a hospital bed, but she prefers to sleep by me at night. We stack her on lots of pillows, on all sides. Sometimes she will stay upright pretty well, but other nights she slides down and ends up flat in the morning. Then she looks bad when she wakes up.
Anyway, this morning wasn't the greatest for her. She got up and sat in the living room with us for a while. She still had no appetite. Right before we left for church, she did ask for some pizza. I was estactic!!!! She ate food!! YEA!!
When we got home from church, she looked a little better. Her eyes weren't red or puffy. Her lips weren't blue. She was smiling. That was short lived. After dinner, (and yes, she ate a few bites again!!!), she was exhausted and spent the rest of the night in bed. She confirmed my worst fear tonight. After family prayer, she and I were talking. She started to cry, and I asked her what was wrong. She told me that even the smallest things are becoming hard for her. She said even opening up Jason's laptop is a big strain for her. She said it is becoming harder for her to walk around the house. She said it is getting harder for her to breathe. She feels out of breathe most of the time now. I fear she holds back much of what she is really feeling from me. Her first concern tonight, when she told me these things, was that I would get upset and feel sad. She didn't want me to be sad. I know my angel holds back so much! She is such a tender-hearted, compassionate young lady. She doesn't want anyone to be sad or hurt or feel bad in anyway, especially her parents. So she suffers in silence. It breaks my heart!!! I told her no matter what, I want her to always tell me when she is feeling poorly. There are medications we can use to help with the breathing. I can encourage her to rest more and spend more quiet time sitting next to her, reading or watching TV with her. We are on the downward path. But I am grateful we got to see her smile today. She has such a beautiful smile!! Tomorrow is another day. I pray it might be as good of day as possible! (0:
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