A Long Talk

Ashley's surgeon, Dr. G, came by tonight. We had a long talk. Mainly about what today's procedure would hold and her conversation with the head of interventional radiology. I'll not write out all the details, but will let you know that Ash has a mass of fluid in the middle of her abdominal cavity behind her incision. She is expected to not only have it drained, but to come out with a drain left in the center of her abdomen. How this is to be done without going directly through the 7 inch wound I have no idea, but this is what I have been prepared to face this afternoon. Currently its scheduled for 3:30 because anesthesia is booked until then. She was leaving our room to go visit with the head of anesthesia to try and get her case bumped sooner. We will see.


Ten minutes into our conversation she said, "Trish, I can't stand this. I know you do it 24 hours a day. I've been here for less than 10minutes and my heart is breaking." Immediately after that she told the nurse to increase Ashley's pain meds to every hour on the hour until relief was found. She assured me that even though there was danger of Ash stopping to breathe that she was exactly where she needed to be in case that were to happen. She is on the monitors in the ICU and there would be a drug available to reverse this if it were to happen.

Ashley has been crying, screaming, moaning, literally writhing all over her bed for the last 24 hours. She is on hourly dilauded, every 4 hour ativan, 6 hour lortab, and 6 hour benadryl. Enough to drop any one of us instantly. My sweet girl still cries out. There is no relief. There has been no sleep. The hearts of all around are breaking as they listen to her cries.

I sit as close to my baby as possible. I watch her face. I see her hurt. I hurt so deeply that I can't describe to you with mere words. My only hope is that today's procedure, as disappointing as it is to have her go through it, would provide her some relief.

Dr. G told me not to expect her to come out of this with a central line. In a perfect situation the fluid would be drawn out of her abdomen and be completely serous and clear. In that case an attempt at line placement could be made. She doesn't expect it and even though there is danger is placing a breathing tube into her throat and lungs two times versus one they danger of placing a permanent line into what may be the very last spot and having it become infected is even greater. I agree. Completely. I need a line to support life in my daughter. I don't need a line that has the potential to make her worse.

She let me know that there was absolutely no way the team could begin to discuss re-transplant at this time. "Ash still hasn't gotten through this." We can talk about it, but it would mean nothing until we see that she comes out on the other side of "this". Its useless talk. I shared with her we have been left with very little hope knowing that there is no one even considering the future at this point. She assured me that when she comes out on the other side of what we are in the middle of that we will talk. She hasn't given up on her, we just have to take each new day and tackle each new problem as it comes. As a parent she understands my desire to bring my daughter home. Or closer to home. "When the time comes I'll let you know to call in hospice. We have gotten much better at re-transplantation over the last 4 years. We are having a lot of success. Not as much as initial transplantation, but much better than we used to be. If we can re-transplant Ash has a chance." We discussed the biggest obstacle being available central line access. Its something that can't be artificially created. Its either there or its not.

She left to go home to her beautiful 5 and 3 year old babies. I stayed and held on to mine. She is right. I do this 24hours a day. She couldn't bare the sounds for 10 minutes before intervening. Its heartbreaking. My mom couldn't stand it. My sisters couldn't take it without trying to advocate for more help. Dave's mom sat for one night. No more. Dave isn't able to talk to me while listening to her cries in the background. Its a MISERABLE situation, and yet I have no idea how miserable it truly is. Its not my body. Its not my pain. Its not my reality. I merely sit by and attempt to minister to my precious little girl. I can't take this from her. Oh, how I want to take it from her.

I held tightly onto Ashley Kate tonight. Its only the second time I have been able to hold her in 6 weeks. Her body hurts so badly that touching her is only causing her more discomfort. I had tried everything but holding her and so I scooped her body up in my arms and held her to my chest. Although her crying did not cease, she snuggled her head under my neck and allowed me to sing in ear for a few moments. She tried desperately to find peace and I tried just as desperately to let her know how very loved she was. Eventually I laid her back on her bed and did my best to fluff pillows, tuck them around her body and cover her with soft blankets. How little I can actually do for my sweet Ashley. I feel like I'm failing her. I really do. If only I could help her in some way. Any way.

As I held her I breathed in the sweet smell of her hair. I stopped breathing for a moment and just stayed in that place in time with my 5 year old in my arms. I prayed to God and thanked him for her, for her life, for her presence in mine. I was so grateful to be me. I was so grateful to be her mommy. I was so grateful to be standing in this room with her in my arms.

So much about our life is not right at this time. One thing that I do know is right is the relationships I have built with my husband, my son, and my daughters. If we have nothing else in this life we have our family unit. If we lose it all, but keep that intact then we will have succeeded. This life can end and I will know that what was most important in my world survived the fires, the trials, the tribulation. I will know that we loved each other well, we lived life fully, we laughed hard, and we had no regrets. In the end its all that matters to me. The five of us. Together. Ashley Kate's survival. Returning home to make us whole again. Agree or disagree that is all we desire.

Dave, Blake and Al...Ash and I love you guys. XMO's from us to you.