Thursday December 17, 2009

Before I write anything tonight, I need to apologize to everyone for yesterday. Jason and I were both struggling. I was in a self pity mode, big time. It was so hard to hear our little angel say to us that she was ready to die. It is hard to see her will to live slowly dribbling away. I know she worries that wanting to die means she is giving up. She has asked me about that several times now. Is she not being strong enough or patient enough? Is she enduring this trial well? I can't believe she would ever think such things. I have never seen such strength!! She has endured well for 12 years now. I told her the other night that she has earned the right to want the suffering to end. She knows what glorious world awaits her! She knows how happy and free she will be. She knows there are numerous loved ones waiting to welcome her with open arms. The pain will end. The suffering will end. And for once in her life, she will have total peace. Jason and I want nothing more than for her to have that. I want her to know, with all my heart, that her loving Father in Heaven loves her so much and is not at all disappointed in how she has carried this burden. He is proud of her, in every way. Just as her parents, grandparents, and many others are so proud of her courage. What an inspiration to us all!!

Today was another agonizing day for her. When she woke up this morning, her arm was still horribly swollen, more so than yesterday. It pained her greatly in the night , and she didn't rest well. We tried the new trans-dermal gel morphine at bedtime, but it didn't work at all. I wish Ashley would have told me how much pain she was in. I was so exhausted, I didn't hear her get up. I didn't know she was hurting. I could have given her the other morphine, so she would have had a better chance of getting some much needed rest. With the horrible night of tossing and turning and trying to get comfortable, her entire body, not just the arm, was aching all over. She wanted to take a bath, to see if that would relieve some of the aches and pains. I gave her some pain medicine, sat with her while she soaked in the tub, and then helped her get back into bed. We decided to try ice on the arm, to see if that would help. I also rubbed her neck and shoulders with warm lotion, trying to relax the numerous knots. The massaging helped a little bit, though not as much as I had hoped it would. She didn't feel like eating, so I let her rest. It wasn't long until she fell back to sleep and rested for over an hour.

This afternoon was the same. The arm ached and hurt so badly, Ashley was beside herself. When Nancy arrived, we talked extensively about pain control options. Right now, we know the morphine works, and with the nausea medicine on board, Ashley has a good chance of tolerating it better. We are working on keeping a little something in her stomach. Whether Ashley nibbles on a saltine cracker or sips some poweraide or eats a popsicle, anything we can think of so her stomach isn't empty. We also cut out other things that she doesn't need, like fiber and vitamins and tums. Nancy felt with those mentioned strategies to keep Ashley's stomach happier, we could then try giving her morphine every four hours. Just a low dose. But keep it in her body so she wouldn't have to play catch up with the pain. I think that is a great idea, but whether or not Ashley's body will agree with that choice, is yet to be seen. There was a suggestion made today that perhaps we might check on a pain killer called Oxycontin. I don't know anything about oxycontin. I don't know if it would work for Ashley, but I am going to find out. There are lots of pain medications out there. Surely, we could find something else besides morphine if the morphine upsets her system.

Tonight my lovely sister and her family came for a visit. We also had a very special friend come over this afternoon to see Ashley as well. Ashley loved having our friends and family here. She wasn't able to talk much, but it was a nice break to the day. Thank you all for taking the time to come visit, even for a short time. It meant the world to Ashley, and to Jason and I.

Tonight, Ashley is once again miserable. Her arm hurt like crazy! She was so tired. Her color looked bad. Her eyes were droopy. She didn't smile. She didn't talk. The one good thing was that she asked for an ice cream cone. I bought her Rainbow Sherbet yesterday, and she loves that! It was so nice to see her eat a little bit. She did try some McDonald's chicken nuggets late this afternoon, but was only able to eat three of them before she felt sick. That, along with two popsicles, was all she ate today.

Nancy and I had a talk about the beta blocker wean when she came today. Dr. Etheridge wants us to wean Ashley very slowly. So at this time, the plan is to keep her on a half dose of Metoporal for the next week, let her body adjust to the lower dose. This should hopefully minimize any side effects from lack of the medicine. After the week, then we stop metoporal, and begin weaning sotalol. I don't want to be in a hurry to wean her. Dr. Etheridge doesn't want us to be in a hurry either. We all want her to be the most comfortable she can be, and minimizing side effects is a big consideration. I feel good about this plan. I hope with a little metoporal in her system through Christmas, Ashley's heart might hold out a little longer. It isn't in our hands. I know there is a plan for her life. Tonight, I feel much more peaceful about everything. I prayed hard today for strength, strength to accept whatever may come, no matter how hard and painful it could be. I know my prayer was heard. We will survive. Here's to hoping this night goes better than last!! (0: