I'll Try Again

I know this is all very confusing. I do understand that. It can get confusing for us too and we have been living it for over 5 years now. So many things to try and understand. The questions don't bother me. I just wish I was better at explaining it to you.

Repeatedly over the last few days we have been asked, "Why don't they just pull out this central line and replace it once the infection is treated?"

I'm not sure if I haven't explained it well enough or if perhaps there are new readers who haven't been with us long. Today though I'm going to try and explain it again.

Each of us has 6 central venous sites in our bodies. We have jugular veins(in the neck), subclavian veins(in the chest) and femoral veins(in the groin area). Each of the these 6 sites are referred to as central veins that lead back to our hearts. They are larger than a peripheral vein. When you have an anatomy that does not allow you to eat your food, digest it, and waste it then you are fed with a solution that is called TPN(it stands for Total Parenteral(in the vein) Nutrition). The TPN contains vitamins, nutrients, and calories necessary to sustain life. TPN is unable to be run into a peripheral vein. It requires a central vein.

Through the years, after multiple central line placements you can begin to lose access in your central venous sites. The fact that a catheter is placed inside of those veins causes scarring many times leading to the loss of that site. Blood clots and occlusions also have caused the loss of sites in Ashley Kate. As her larger, central veins have scarred down, occluded or developed blood clots, her body has compensated with the formation of hundreds of collateral(branching off from larger) veins throughout Ashley's body. The formation of these collateral veins is a blessing and a curse. A blessing in the fact that God created us in such a way that her body is compensating for the loss of blood flow and making a way for it to still occur inside of her body. A curse in such a way that it makes placement(the threading of the wire) to her main veins very, very difficult even for the most skilled of physicians. Ashley's body has literally hundreds of "spider like" branches of veins that have formed over the years. This makes the placing of even a PICC line(a temporary form of central line) near impossible in her. So a PICC line is not an option for us either.

For a transplant the magnitude of what Ashely Kate needs to be physically possible she must have a central line placed in a vein above her diaphragm. As they open her up they have to clamp off several veins in order to place the liver and bowel inside of her abdominal cavity and to keep her alive during that placement her central line has to be above her diaphragm.

Ashley's sites are all gone. They have been used up, collapsed, or damaged over the years. The site we currently have this infected line is was "created" using very, very difficult and non traditional methods. It was indeed miraculous the way it was done and we were told that it was more than likely not even possible for it to happen. But...it did. Grace of God? I think so.

A trans hepatic line(like the one she came out of ex plant with) is not an option for transplant since her liver(where the hepatic veins are located) is needing to be removed and replaced with another donor liver. It is not located above her diaphragm.

This all makes perfect sense to us because we have been living it for years and years as Ashely Kate's parents. I understand that my explanations may not make perfect sense.

Survival of small bowel transplantation with only one central line site is nearly impossible. Its technically possible, but it is not probable. Dave and I know this. Our transplant team knows this. Still we are all willing to attempt it since it is the only hope that Ashley has left.

It sounds simple to remove this line, treat her infection, and then put it back. EXCEPT that its not that simple anymore. We have run out of access, limiting our options for treatment of this line infection.

One of the biggest reasons we have not listed Ashley for transplant yet is that we don't know where we will "go" I mean where we will place a line in her if her current line becomes infected and her body is septic. A line is IMPERATIVE while recovering from transplant. It is needed for nutrition, medications, and fluids. Without access she will die.

So...its a very difficult place we find ourselves in at this time. Very, very difficult. Removing this line, her only chance for re transplantation, is an impossibility. Currently the infected line is all that is keeping her alive. Without it she would be unable to receive nutrition and she would die.

I feel the crushing of this burden in our lives every minute of every single day. It never gets lighter. NEVER.