Just Hanging Out

Ash and I are just hanging out while we wait for her turn in the OR. Yes, we decided to attempt another line placement. Mainly because they need weekly labs to monitor her status for quite a while and for the clotting factors and her little veins just won't cooperate with that schedule. They basically have a one shot deal. The only passable access she currently has (other than a femoral line which we won't do because of her ostomy) is her right sub clavian. The doctor feels like he can place the line. He actually said he is about 90%sure based on the scans he has done on her that he can get it placed, but he said if it doesn't go in after a couple of sticks he will stop. In that case everyone will just have to take what they can get as far as lab work and blood draws go.

We are a little nervous about another line because another line means another chance of a blood clot developing on that side. She will be on the anti coagulants so that should help but they said that once you develop a clot you are always at a higher risk for more to develop. To be honest there are so many different areas of Ashley's care that blood clots and loss of access never really crossed my mind. We stay plenty busy with all the other stuff that goes along with Ash's transplant. It is a never ending maze of issues that we will forever be navigating. We have often been told that when you tranplant an organ you are actually trading one disease for many. I guess they were right. We have definitely developed a port folio full of them!

I look at her face and into her eyes. I listen to her giggle and light up when she smiles. I rock her to sleep as she pats me on the shoulder, and I know that with all the complications. All the issues. All the struggle. It was worth it, and we would do it for her again. She lights up a room and loves her life. She doesn't know its supposed to be any different and I love her innocense. I am so grateful for this child.

Well here they come and here we go. Thanks for praying for us, and for her. It means so very much to our hearts. Take care today. Trish