Update

Ashley Kate went into the OR a little before 2pm and didn't come out until well after 5pm. She is battered and bruised(seriously she is) and has a very temporary "permanent" central line. Her surgeon met me in the ICU waiting room and as he approached I could tell the news he was going to deliver to me was not good. As if I couldn't tell by the look on his face, he approached me all the while shaking his head no.

We sat and talked. For a while. We are running out of options. He tried more times than I have taken the time to count to place a line in one of her main veins. The interior jugulars or the sub clavians. He was unsuccessful. There is no longer any access in her upper regions for line placement. This is not good news. Everything is scarred down from the multiple lines she has had over her short life. He finally decided to make an incision on her neck and tunneled a catheter down through a large collateral vein into the area he needed to go, but it is not ideal and it will not last. He also attempted to place pic lines in her arms with no luck on either side. In his words, "Her veins are a mess. I shot contrast through them to try and find something and her chest lit up like Medusa". She's in bad shape if she needs this line for any length of time. Our hope is that it will get us through the next couple of weeks and then it can be pulled out and she have no need for one.

We still have the femoral veins that are patent, but not ideal for a toddler with an ostomy bag that is pulled off or leaks almost daily.

"What do we do if she loses all access?" That was my question.

"Your done. If she has no access and she needs access to fight sepsis or rejection or organ failure then your done. Its over." He then walked away, stopped in the doorway and said, "What we need to happen is for her to grow up. Get bigger and stay well for a year or two. Then perhaps with the change in her body size she might have some of those veins open back up. That's what needs to happen for her." Then he left.

I sat there for the next hour trembling. My heart racing. Wondering how to grow up with a bowel transplant and avoid the need for line access. I know in my heart that its impossible. At some point we will be done and we will lose. She will lose. Tears flooded my eyes and fell in my lap. I prayed, pleaded and just cried to God. Without His hand on her life then we will lose and I can't imagine my life going on past that. I NEED Him. I need Him to help us raise our daughter. I want for to grow up. As she came out recovery I decided to wipe away my tears, push all the fear into the deepest corner inside of me that I can possibly find and love her today. For I have been given today with the most beautiful little girl my eyes have ever seen and for this day I am grateful. If and when we get further down this predicted line I will look to Him for the courage and the grace to walk that line and then beg for His mercy to fall on my daughter's life. I'll never stop fighting for her until He reaches down and removes her from my grasp.

As the minutes tick by she swells larger and larger. There is a lot of trauma for her to overcome from what you would expect to be a "simple" line placement. It wasn't so simple. She is already bruising and each time the nurse steps in she comments on how her face, her neck, her eyes, her arms are changing and how quickly it is happening. By morning she won't be recognizable. Tonight I pray for ease of her discomfort and for this stooling out to stop. Like the doctor said, "she needs to get well. And stay that way."

I remember years ago as we sat with our GI doctor and his nurse that had been caring for Ashley and discussed the idea of transplant. His comment rings in my ear on days like today. "Once we pull the trigger it can never be undone. Think about that." We did think long and hard about it and the alternative was never an option for Dave and I. I firmly believed and still do that God had a plan for placing Ashley in our hearts and in our arms. Giving up was never supposed to be a part of that plan. I know that and remind myself of it almost daily.

Your prayers and you support for our sweet Ashley bring such comfort to this momma who loves this little girl with all that I have. Thank you from my heart. Trish