She woke up yesterday, feeling short of breath and her body hurt all over. She was in enough pain, she wanted some morphine and she wanted atavan too. Ashley was already extra groggy from the night before. Because of her discomfort, I had given her a larger dose of morphine at bedtime. I figured she would wake up feeling really out of it, and she did. Her stomach was hurting badly. She tried to vomit, several times. I tried everything I knew to help her. Nothing helped. Not extra tums. Not peppermint tea. She finally did take some Flagil, which is a med they gave to her a while ago when she was having chronic diarrhea. That did ease the stomach discomfort a little bit. With all this trauma going on in her digestive system, she didn't eat much at all. In fact, the only thing I recall she ate was some potatoes and gravy from KFC. For some reason, when she eats that, she doesn't get the diarrhea. Thank goodness because so far, that is the only food we have found that she can eat without horrible after effects.
Once she had the morphine and atavan on board, her pain level went down, but her stomach was still messed up. And she was so loopy, she couldn't walk around the house without help. She stayed in bed all day long, only getting up for bathroom breaks. She looked awful! Her skin was gray and dull. Her eyes looked glassy and unfocused. She had more swelling in her face and tummy. I did some research on the protein losing enteropathy. Part of her swelling could be related to that. One of the complications arising from this condition is that the body retains more fluid. The patient will often get puffy in the face, ankles, abdomen. They can have more fluid in the lungs and around the heart. In severe cases, the patient will be at risk of severe infection. It is plain scary! She definitely had more fluid on board.
She stayed very sick through the evening and into the night. I was so hoping with how tired and weak she was, she would be able to sleep. But not so. She was up and down all night long. Every time she had to use the bathroom, she had to wake me up, which was fine. But she would apologize up the yin-yang for doing so. Ashley is always apologizing for everything. For those of you who know her well, she says sorry constantly. She never wants anyone to be bothered by her. That is her biggest fear, that we will get tired of taking care of her and get rid of her. I am not kidding! No matter how many times I tell her how grateful Jason and I are for her, she still worries.
Needless to say, she was beyond exhaustion this morning. When she finally crawled out of bed, she was sobbing. She had so much fluid in her lungs, she couldn't breathe. She was scared. She was shaking and coughing. I immediately gave her a big dose of lasix to help get rid of some of the fluid. She also wanted morphine and atavan to help calm her down so she didn't feel so jittery and scared. Morphine will help with the shortness of breath. The combination of the two drugs works even better.
It took a couple of hours, but she finally calmed down a bit. Fortunately, it was nurse day today. Nancy came in the nick of time, and calmed me down a bit. I was a nervous wreck, and super emotional and scared. She and I came up with a better plan to help control the increase of fluid and to better manage her pain. She talked to Ashley for a while, and made sure before she left, that both Ashley and I were ok. Define ok! No, we weren't ok, but both Ashley and I calmed down.
Ashley did nothing but lay in bed the entire rest of the day. She slept off and on again, but did nothing else. She didn't even come out into the living room with her brothers when they came home. She will usually spend a few minutes in the living room, but she didn't feel like that. Tonight, right at supper time, I came into the bedroom to check on her and she was asleep. She slept for almost two hours then, woke up to make a run to the bathroom, and then went right back to bed and fell asleep again. She didn't even try to eat anything, but she did drink a little. I am so scared of her getting dehydrated. Between the lasix and diarrhea, she will get dehydrated fast if she doesn't have enough fluids.
It is a very scary time. I feel her slipping away. I don't think she is going to bounce back. Her body is growing weaker every day. There are no words to describe her suffering. She is miserable in every sense of the word. I don't know what to pray for. I don't want her to leave. But I don't want her to go on like she is. She has no quality of life, at all! Everyday tasks are impossible for her. Even opening a door is hard for her. She can't eat. She can't sleep. She can't breathe well. I can't bear to watch her hurting like this day after day. It is killing my heart! I can't fix her! I can't ease her burdens. I can't take her pain away. I can't do anything but hold her and pray. So do I pray for her to go? Oh how my heart hurts! I love her so much! I don't know what I am going to do without her. I guess this is where faith comes in. I can only see one small speck in the eternal realm of things. But there is someone whose vision exceeds that of my own, someone who can ease every gut-wretching ache and pain. I know I have to trust in our Savior and in my Heavenly Father. I have to trust that they are both watching over my little angel. She won't be alone in all her sufferings. I know this. And if the time comes for her to return to her Father in Heaven, the angels will come for her. She won't be scared. She won't hurt anymore. She will have complete understanding of everything she endured here on the earth. She was promised this. I know it is true. And for those of us watching her go through this awful trial, there is comfort for us too, but only if we ask for it, and have faith in our loving Father in Heaven, and in his son, Jesus Christ. We have to keep the faith and never doubt that there is a reason for everything. If we are called upon to have this trial, then we are all strong enough to endure it. Of this, I do know.
May all your hearts be filled with peace tonight. Thank you for loving us, for praying for us, for helping us carry this burden. Keep praying for our beautiful angel.
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