I'll try to explain

I am going to try and explain what the latest development in Ashley Kate's transplant journey is. This whole blood clot issue.

I just spent a good amount of time with the vascular surgeon and he did a wonderful job at helping me to know exactly what was found, how to treat, and what risks we are having to face. I will forever be grateful to those doctors who take the time to help us know what we are up against. He even drew me a picture so that I might know what I was "picturing" in my head was correct. We went over the images from yesterdays SVC gram and he would say this vein is open and flowing, this one is not, this one works a little, this one does not. It was so helpful to have the actual images and knowledge of what is still viable and what is not. So what I know is that Ashley's right internal jugular vein is shot. No longer does blood flow through it and never will it again. Its gone. If you remember the purple line that was placed back in November? This is more than likely the culprit. It was too big and it destroyed her right jugular access. Her right sub clavian veins are open and blood is flowing although the were not able to navigate through them enough to place a more permanent line. This was the first hour and half of yesterday's surgery and knowing what I know now it is a huge blessing that they were unsucessful. Moving over to the left side of her neck and chest. The left jugular vein is open and blood flows through it. Since the "shut down" of her right jugular the left has been compensating for it and all blood return from her brain, face, and head was running through it. She currently has a very nasty, temporary triple lumen central line placed in her left sub clavian vein. This vein is where we have a problem. It was discovered in yesterday's procedure that a large blood clot(2 1/2 cm) had formed around the catheter(the central line) occluding return blood flow from her face. This is not good or happy news for us. Blood clots are dangerous and because of the danger of this clot the temporary line cannot be removed and replaced with a more permanent line. If they remove this line which they almost did yesterday the clot will be free to travel. Potentially into her lung resulting in her death. So what do we do? We have to live with the risk of line infection and sepsis with this triple lumen until we can dissolve the clot enough to safely remove the line. The current course of treatment is a heparin drip. Heparin is a blood thinner. It in itself carries risks, but we have no options. Once the blood is thin enough for the clot to begin breaking down then the line can be removed. How long will this take? No one knows. For know we are planning to be admitted for a few more weeks. Before discharge a transition will have to made to from the drip to daily shots. Twice a day. For three months. I need to stop talking about this part now because the thought of this is where I start to become angry.

So the formation of a blood clot around central lines and the loss of access to any of the 6 sites a person has for line placement is fairly common. It happens to lots of people. Adults and kids. The swelling of her face and head are not common which caused nuero surgery to consult with us this morning. Basically they have no idea why this has happened other than the loss of the ability to compensate for the lack of the right jugular vein. They wanted to be sure that she was not losing blood to her brain and we are to be on alert to look for things such as seizures, stroke, loss of consciousness etc. At this time we see none of these things and Dave and I are not going to entertain those ideas unless it happens. Her swellling is already getting better and we expect that is because of the heparin she has already received.

The main risk to Ash at this time is infection leading to rejection. It is truly no different than it has always been. We just have this whole other blood clot issue that will keep us hospitalized for a while longer. Where are we going to be hospitalized becomes the next question? After much discussion with vascular and neuro surgeons we have decided that the flight and the transfer will pose no greater risk to Ashley Kate and so we will be transferring sometime on Sunday. We hope. We were supposed to go tomorrow, but they called back and said they can't take her until Sunday. The biggest obstacle we will face is if Ash becomes septic and slips into rejection due to a central line infection. We had really hoped for a more secure, permanent, single lumen line for Ashley to transfer with. It isn't possible, so we now have to deal with three lumens(that means ways to access her line) and try to keep those infection free. That is where I come in. I allow NO ONE to touch her line other than myself. That does not mean that she won't get an infection. It just means that I know it is being cleaned well before entry and that the fewer hands on it the better. Please pray that I will be able to effectively portray this to our new nurses in our other hospital. The other fear that we have with this temporary line is that Ashley Kate is quite capable of removing it herself(which she has done multiple times before) and in that case we are in danger of the blood clot moving down into her lungs or up toward her brain. Again, we don't want to dwell on that.

If you are still with me on this post then I congratulate you because that is a whole lot of information that you may not want or need. I just wanted to try and explain for the several people who had asked what was going on. Overall Ash is doing better today as long as we don't touch her. They tried 11 times(thats how many holes I found) to place an IV in the OR yesterday. She is beaten and bruised everywhere. She has two new wounds. One on each side of her neck. One looks pretty good, the other is still a little weepy and yucky. I am allowing her to remain flat on her back today. Not holding her or making her sit up to play because her chest is so, so sore from all the digging around in her veins yesterday. She is actually watching a movie and playing as I type.

So our hope is a med flight out of here on Sunday. Admission to Sutton Children's hospital at Shumpert in Shreveport LA. Resolution of the blood clot issue. Maintain her infection free status. Removal of this line. Adjustment to daily shots. Return to our little yellow house to begin to live again. This is our hope, still knowing that with Ashley Kate's transplant journey things could change at any moment. Its realizing this and learning to really live during the in between times is what we are trying to master. Thanks so much for praying for us. She still has a little ways to go, but I believe she will get there. Home. Another day closer, right?