In and Out
Its been a really, really long 8 weeks for us. In and out and in and out and in and out, etc., etc., etc. I never dreamed life would be like this for our girl. Never, ever did I imagine she would be spending her life in and out of hospitals. I just didn't. I find it more and more difficult to hold on to the dreams we dream for our Ashley. I wonder if the day will ever come where our little girl is allowed to be just exactly that...a little girl.
The strength this child holds in her little finger far outweighs the strength I possess in my entire being. She is the most amazing person I have ever known, ever loved, and have ever had the privilege of holding tightly to. I look into her eyes, those twinkly eyes that I love so very much, and I am inspired to keep believing, keep trusting, and keep holding on to my faith. The faith that assures me there is a plan and that He is not and has not ever been caught off guard by one single moment, event, or twist and turn of her life. If I don't hold on tightly to that then I have nothing because I don't get this. I don't understand it. I don't like it, and I don't know how to pretend that her pain and her struggle is good, or ok, or a "blessing" in our lives. It isn't. Its not good. Its not ok. Its not blessing us or her or anyone as far as I can see. Then again its not my eyes that can truly see. Its His.
I know "all things work together for good for those who love Him". I believe it somewhere deep inside of me. Some days its just really, really hard to pull from that place and keep telling myself that its true.
Ashley Kate is currently resting with the help of a double dose of Morphine. Until it kicked in she was screaming silently with no voice because she was hoarse from all of the screaming. Tears rolled down those rosy cheeks and her tiny hands told on all those who had hurt her and what they had done. She told her mommy on them and her mommy could do nothing about it. "Hurt, cry, mama". "Hurt, cry, hold me." "Hurt, cry, sad." Over and over and over again. In those moments I feel as though my heart can not bare it for one moment more and then I look at that face and see that I am NOT the one who is having to bare it. Its her. My tiny girl. This one who lights up our home. The one who has taught us how to live every single moment of this life to the fullest. The one who changed me. The one who stole my heart from the moment I heard of her existence. To be honest she had stolen my heart even years before that. Oh, my sweet girl!
The art line was finally placed into the inside of her right ankle. After 6 attempt into her wrists with physicians working on each side. They couldn't stick her wrists any more and went to her feet. I have no words to describe to you the amount of hurt she is in. Her bowel was scoped and the biopsies should be on their way to Nebraska. I am holding onto a small glimmer of hope that the photos I saw of the inside of her bowel this time looked better than the last set. The thing that does concern me is the smooth appearance of the walls of the inside. This could suggest to me that they are too smooth. No villi or mucosa present? It is a possibility. The encouraging part is that it is not angry, ulcerated, or bleeding. It could really go either way. As always, we do not want to receive a call from Omaha. No news will be considered good news.
The plan from here, without a call from Omaha coming in, is to continue treating Ashley for 7 to 10 days for the bacteria that is in her blood stream. It is yet again a different type than the last two were. The doctor's here in Shreveport would like to get her fluids and electrolytes balanced and then send her home to finish up the course. If we can accomplish this she may be discharged Saturday or Sunday. Then at the completion of the course they will schedule surgery yet again to place a central line in her left femoral vein so that she may receive TPN nutrition as she works her way back toward tube feedings. After testing positive 3 times in 8 weeks for a line infection I'm not near as confident as I have been her whole life about staying infection free. I think our luck has run out and her body has caught up with us. Her bowel walls are leaky and she is very susceptible to becoming septic yet again if it doesn't hurry up and begin to heal.
Dave will be joining us here in a few hours. He is currently at Blake's awards ceremony. Somehow, one of us will be in Tyler with Allison this weekend as she plays in a big soccer tournament(if the call doesn't come in). Blake has the weekend off. Tomorrow is the last day of school and will be followed up with parties for both of the kids classes. This will be Blake's last chance to hang out with the friends he has made at CHS because he will not be returning there in the fall. I really wanted to be there to capture lots of memories on film, but it won't be possible. Allie will return to CHS next fall. They are both very excited about tomorrow and about summer vacation beginning. I'm hoping with all that I have that Ashley Kate and I will be around to enjoy it with them. Allie just called and told me how "weird" it is to drive up to our house and be locked out of it and to see a for sale sign in the yard. "Its just too weird, mom." Yes, I think that it will feel really "weird" to me as well if Ash and I get the chance to drive up to it also. Life is changing for our family. Big things are happening. Some good and some not so good. I guess that's just the way it goes.