Where we are
I want to take just a few minutes this morning to try and explain just a little bit about where we are and what is going in with Ashley Kate. I very much appreciate the prayers and support each and everyone of you have offered up for us. I will admit that this is a very, very difficult time for us and yesterday was hard, but we have harder days ahead I'm afraid.
I did take Ashley in early yesterday morning. So early in fact that I met her doctor in the parking lot of his office! He quickly examined Ash for us and determined that we in fact should do a CT scan as soon as possible of her abdominal area.
The CT scan revealed two very large pockets of fluid that had accumulated in the left and right upper quadrants of her abdomen. You may or may not be aware but Ash has a deep incision vertically from her pubic bone up to the top of her rib cage and so if you visualize this as a separation between her left and right side then you can imagine how her torso is divided. She also has a horizontal scar that goes across her lower abdomen and so she's pretty amazing to see! She has large pockets, or abscesses of fluid on both sides right under the diaphragm.
After a very long afternoon of working the phones and sitting in the ER we were transported by ambulance to Children's Hospital in Dallas to be taken into surgery to remove these abscesses. We still have not made it to the OR because they are trying to make a determination who best can remove them and how they want to attempt it. It will either be the liver transplant surgeon or general surgery, but our hope is that perhaps Interventional Radiology may be able to step in and drain them.
The worst case scenario, and apparently a likely one, is that they have to go in and re open that old transplant incision to access the pockets and remove them. The surgery and recovery would be brutal on her. So much so that I'm not sure we wouldn't lose her to a possible infection while trying to heal from it.
There is so much going on at this time in Ashley's little body. If I began to explain or to share I would probably never stop. Just know that she is very, very fragile and her liver is very, very sick. My heart hurts from the many phone conversations and the content of those conversations that we had yesterday. All in all it looks as though we may be at the beginning of the end, and how long we will have before the end comes no one knows. We just know that we are closer than we have been in a very, very long time.
After speaking with our transplant team yesterday they feel based on the lab work that Ash has now entered the end stages of liver failure. We have been asked to make some very hard decisions in the next two or three weeks, and I'm not sure that we can make the decisions we are being asked to make. As I shared with Dave yesterday, how do you choose between misery and misery for your child? I don't know how to do this anymore or what is right or what is wrong. I just know that I love her more than my words could ever begin to describe.
Ash is stable. Actually her vital signs are all rock solid. However her organ function is not. We've known that for a long time. Her liver, spleen, kidneys, are all very sick and have been taxed by the constant use of antibiotic used to treat re recurring infections in her body. This current infection and the abscesses may have been there for a very, very long time and could be the source of all the infections she's had over the last couple of years. That is a theory that is being thrown around. If that is the case then our hope is that once the fluid is removed that perhaps she may rebound and come back strong continuing to live a life of quality for a while longer.
I refuse to enter into the depths of my emotions or the pain that we feel at this time because I'm afraid I'd never stop crying. At least not soon enough to function today as we begin our journey in a new place with a new team of doctors. My heart is broken. Its been broken from the moment I learned she'd been born. Still I wouldn't trade one day of that broken heart because without it I would have had to live my life without her in it. I can't even imagine.
I'd ask that when we make it back home, if she's ever able to be at another game or out in our community that you would please not be afraid of her. If you've loved her and been a part of her world up to now, please, please don't let the color of her skin scare you and keep you from approaching her. I will admit that when I see how afraid other people are of her appearance and I see the look of shock in their eyes that it scares me even more than I already am. She's still Ash. She's just a different color and a different size for now. So if you talked to her at the ballpark every week before this setback, please keep talking to her.
Dave will be leaving tonight to get back into the office and then Ash and I will be in new territory all on our own. They have no idea how long we will be here. It could be days or weeks. I'm shooting for days though:)
Thank you for you love, encouragement, and prayers. If you see my big kids today love on them a little bit for me!