Just logged on and realized I have not updated here in a long while. So buckle up. The last month has been crazy. Everything from starting weekly blood and iron transfusions on top of my already crazy medical schedule has been an adjustment. I also spent much of the first week of January preparing for our trip to Miami!
On January 11, Gabe and I went down to Miami for my pre transplant evaluation. We knew it would be busy and chaotic but did not anticipate how exhausting it would be. We had almost no free time and spent 14 hours in the hospital everyday. During our only free day, we ventured down to the everglades so I could see some gators! Then we ventured to Miami beach, which lasted about five minutes because we are too old for the Miami beach scene. ;) It was what I always thought Miami would be. CRAZY. And don't even get me started on the traffic!
We checked in to Miami Transplant for the first time Monday where I had 61 vials of blood taken! I didn't even know I had that much in my body but turns out i did. I had 19 cat scans/mris/imaging studies and more tests than I even thought possible. We consulted with  more than 15 doctors and transplant surgeons. I had three surgical procedures ( and one complication that has thankfully healed). When they say they are checking everything, they mean it!
Starting on that Wednesday, as we starting meeting the transplant team, it started to become clear that there would be some unexpected news. When meeting with the GI transplant surgeon, they let me know that my liver scans and tests were showing that my liver was cirrhotic. For whatever reason, my liver is having a very hard time processing the TPN (which is a known risk) but mine seems to be advancing pretty quickly. The liver injury I had from sepsis in September also left some irreparable damage which was hard to hear. So what started as a small bowel transplant evaluation ended up being a evaluation for a multi visceral/5 organ transplant. Due to the severity of my motility condition , and that I currently have zero function in my GI tract (small and large intestines), the transplant team believes the MV transplant is the only option moving forward. They also diagnosed a clotting disorder called "Protein S Deficiency" which means I clot much easier than other people.... making having a central line even more dangerous. Like my doctors here in North Carolina, their goal and mindset is the same. I do not have much longer on TPN. It is sustaining my life and destroying my organs. I need to be off of it as soon as possible. 
On Thursday of last week, the transplant team met with the committee and UNOS and they all voted and agreed to listing me top priority for transplant. They want and are hopeful that the transplant will be within 3 months. I have barely had time to process this, let alone start planning it. Logistically and financially it is a nightmare. I will be in patient in the ICU for a minimum of 4-6 weeks and then have to stay in Miami near my transplant hospital for a minimum of six months. This is the hardest part for me because I cant even imagine missing a single night with my kids, let alone what could be a year. There is nothing easy about it.
I will be posting an update about logistics, prayers and needs sometime this week. In the meantime, please start praying. 

Healing or Heaven, 
Sarah