We've been treating Ash for a line infection since last Thursday. The colonized staph that resides in her central line flared up and she began vomiting and spiking fevers Thursday morning. She woke at 6 that morning soaked by perspiration so much so that her line dressing had come loose and she was hollering to let me know there was a problem. Her cultures were drawn that morning and grew out rather quickly.
Ashley has had some sort of cold/ear ache stuff going on since the middle of August. She has a cough and some drainage and just feels not so good. It takes her forever to shake any type of cold or virus. Her little immune system isn't strong enough to get rid of it so she's been battling it for almost 4 months now.
I dreaded her lab draw this week knowing by her appearance that things had not improved. The color of her skin and the whites of her eyes told me things were going to look much worse than the previous week. Sure enough her bilirubin jumped by 5 points in just over a weeks time. My heart sank when my suspicions were confirmed. I keep hoping for a miracle but have yet to see one take place. There isn't anything that can be done to reverse the damage the TPN is doing anymore. We continue to use Omegaven as her lipid source, but it is no longer holding her bili at a safe range. I wish there was more we could do to save her liver from declining.
I think the opening in her transplant scar has finally begun to heal. When I changed her dressing last night it looked really good. We switched out her g tube and increased the length by half a centimeter. It seems to have helped some of the discomfort the was experiencing.
We are living life as normally as possible. Still allowing Ash to go out on the days she feels good enough too. She loves going to basketball games or on car rides. Dave and I took her out with us one day last week and allowed her to do a little window shopping. She was so funny as she chose this or that and signed how much she loved it. We took pictures on his phone and told her we would show them to grandma and she might get them for Christmas. I never know exactly how much Ash is understanding when I talk to her, but we all just act like she knows what we are saying. The next evening she proved to me once again that she is all there and that she knows whats going on around her. When her grandparents came over for dinner she immediately signed to them that she was ready to leave and go shopping for the toys she picked out. It was so funny!
Overall I'm thankful that she is feeling as well as she is at this time. Things have changed even more since my last update on her medical status, but she continues to smile and giggle and do her best to be happy. We are so blessed and so grateful to have her with us. We've had so many strangers approach us lately to share a kind word, make a comment, or reach out to touch Ash. Its been a little odd to watch the impact she is having on people these days. Not in a bad way, just a different way. I think the color of her skin gives them even more information about her condition than her chair or her IV or the fact that she is signing to us. Something about seeing her causes them to pause in their days and take notice of her. Yesterday two men were having lunch across from us. As we got up to leave one of them spoke to ask me her age. He then smiled and told me, "You all are very blessed." I answered to him that we were very, very thankful to have her and he wished me a Merry Christmas. I walked away silently wondering what about her made him take notice and what impact had she had on him in those brief moments to make him want to speak to us? I'll never really know, but his words were kind and very appreciated. I was comforted by his words because I know that God is still using her, and I know that as long as He still has people for her to reach that she will be with us. My heart smiled at that thought.
We love her so deeply and the thought of her not being with us someday is crippling. I'm working so hard at staying focused on her today's and not worrying about her tomorrows. Every once in a while Dave and I may have a brief conversation about where this is all heading, but its not often and its not easy. We never discuss it with the older children. They love her so very much I can't bare to break their hearts. Not now. I pray not ever.