Okay, racing fans - strap yourselves in for information overload!
Forgive me if I overlook something. I am sure we will revisit it in a future post. First and foremost, Sarah will be having a minor surgical procedure Friday afternoon to put a central line (or brouvac) into her chest. This will make it easier to get nutrition to her. They have had to add a daily regimen of lipids and other extra nutrition in order to beef her up a bit. We will have to carry a little "backpack" with us for the time being. The excitement never ends.
Second, Patty is undergoing training tomorrow to be able to swap out the IV's and maintain the nutrition supplements as long as is necessary. We don't know how long that will be at this point. Patty told me this evening that a nurse will visit our home Sunday to make sure everything is set up okay and that we have a grip on things.
Next up is all the material we covered on Monday and Wednesday in our meetings with the transplant nurse coordinator and Dr. Horslin. We are experiencing some serious information overload at this point but I would rather have that than some vague notion of what is possibly going to transpire.
This coming Monday the entire transplant team will meet and Sarah's status and place on the transplant list will be determined. Any time after this we could possibly receive "the call" that a suitable liver has been found. The hospital must respond within one hour of receiving their call, so we must have all phones on all the time! Just because a liver is found doesn't necessarily mean we will have to rush off immediately for Children's but would likely do so within a couple of hours. We reconfirmed with Marsha on Wednesday about the likelihood of last minute disappointment and she said the only way a transplant would be nixed with short notice would be if there were structural defects in the prospective liver. So, we are quickly moving into "wait and see" mode. It could be as short as a few days to months to wait for the liver. Dr. Reyes, the lead surgeon, seems to think it would happen pretty quickly only because the number of little ones on the waiting list is very small.
The biggest hurdles lying ahead are post-transplant. This team has performed many transplants and are not at all concerned with that aspect. We still need to be praying against infection during and immediately following the surgery - okay, let's be serious, we need to praying CONTINUALLY against infection for Sarah's entire life - since her immune system will be compromised once the anti-rejection drugs are started. This leaves her more open to colds, infections, high blood pressure, high cholestoral and even cancer. For the first 3 months, she won't be able to be around any other kids but our own, and anyone who remotely suspects they are sick or carrying something will have to tread softly. This itself causes some potential angst and frustration so continued prayers in that area are appreciated.
There is a lot more info out there but I will stop there for now. I am happy to go into more detail and likely will the closer we get to transplant time, and even during and immediately following. I want everyone to know how to pray and to be as informed as possible. The Seattle Childrens website has some info regarding the whole transplant process, though not in as great of detail.
As always, we are blessed to have you all standing with us in prayer and are grateful for your continued support, sacrifices and love & care.