update 1/22: a week full of information and emotions
This past week was the week we have been looking forward to since finding out that Hudson's Kasai procedure failed. We knew the evaluation days would be long and information filled but nothing we couldn't handle.
We were lucky that my dad was able to fly out and be the extra set of ears during the evaluation. Hudson enjoyed listening to his Grandpa read him the latest Model Railroader magazine!
First day of evaluation
Met our coordinator.
We sat with our transplant coordinator who will quickly become an extension of the Hill family and an advocate for Hudson during this journey. She walked us through our new bible, our transplant binder, to understand the high-level overall transplant process from evaluation to when Hudson is 21. We knew that going the transplant route is a lifelong commitment however, hearing about the requirements, risks, etc... was a wake up call. We've read about them but to hear someone say it as it applied to Hudson immediately made my stomach turn and have the urge to throw up. That being said, the positives and talk about Hudson's future completely outweighed the negative, scary stuff.
Cry count: 2
Met with the surgeon.
As if I didn't feel sick enough from the coordinator, we had to listen to all the possible reasons Hudson's surgery could be complicated. We also listened to the pros/cons of the different types of liver donation (yes, there are multiple ways to donate and have a liver transplant) This evaluation process is the time to lay it all out on the table and discuss the good, the bad and the ugly. I have never dreaded asking a question more in my life but knew that not asking it didn't make it go away -- would there be an instance or circumstance where Hudson wouldn't be operable and ineligible for a transplant? The answer was no - the surgeon is confident that there are options for Hudson's transplant. Phew. I immediately started crying.
Cry count: 1
Met with the social worker.
The transplant community is incredibly tight knit - something I am learning very quickly. The social worker introduced us to a myriad of organizations and groups for kids and families who have gone through the transplant process. She also wanted us to understand the emotional and physical rollercoaster we are about to embark on and make sure we are comfortable leaning on our "people", AKA you guys.
Cry count: 3
Evaluation day 2
Actually speaking with the liver doctors was one of the consults I was most anxious for. I didn't quite know what to expect because we knew that Hudson needed a new liver. The doctors explained the history of the transplant and their thoughts on liver function post-transplant. It turned out to be one of the consults that I felt more comfortable as we continued and felt (I still feel) that I was processing all the information. One of the options the doctors and surgeons presented to us was the use of a living donor - something we did not know was possible for Hudson's case. Before raising your hand to ask about the criteria, there are very specific requirements for a living donor and the reason we don't hear about more living donor situations is because they are incredibly selective on which donors they (University of Washington) wish to proceed with. Ultimately we will get Hudson a liver, it is just a matter of deciding which direction will be best for Hudson because this will be a selection that effects Hudson for the rest of his life (yes, captain obvious)
Cry count: 2
Keeping Hudson as healthy as possible prior to the surgery is essential. We are meeting with a nutritionist weekly to monitor Hudson's growth (or lack thereof). As of right now, Hudson's Z score is almost -4 which means he is sufficiently malnourished. This isn't because we aren't feeding him or giving him the supplements he needs. To put it in perspective, he is eating almost twice the volume of a normal infant his age but he is in the 1% for overall growth. This happens for a couple of reasons. First, biliary atresia causes the body's metabolism to speed up. Secondly, since his liver is not functioning, it is not processing the food that he is consuming. The body is not able to grab onto the proteins and fats that a normal liver normally does to help digest and absorb all the nutrients from our food.
The nutritionist also explained the things we will begin to see as Hudson starts to decline. This includes refusing to take a bottle (already happening), have no interest in eating (already happening), not able to keep food down (beginning to happen). What does this mean? This means that we have to get Hudson nutrients some way in order to keep him healthy enough for transplant. We have various options such as a feeding tube or an IV and it was explained to us that we will most likely progress in that direction prior to the transplant. We currently already have the feeding tube in (called an NG tube) on a continuous feed so Hudson is getting small amounts throughout a 24 hour time period.
So why isn't this working? With liver failure, the liver starts to enlarge and the person's midsection begins to retain fluid. As the failure progresses, it gets bigger and bigger. Well, all that liquid needs to go somewhere and it expands at the expense of the stomach. The stomach gets so smashed up that there is no room for anything in it - even food.
Cry count: 5
As the evaluation process occurred, Hudson has been receiving medicine for his infection and over the past couple of days has started to show signs of the 'normal' Hudson we know and love. He is starting to interact more, flirt (with the nurses) and give us that amazing smile you have all seen us brag about. He will remain in the hospital until he is stable enough to go home without the doctors being concerned the infection will come back. We have to be extra cautious about this because in the event Hudson is sick when a liver becomes available, he would have to refuse it. We officially have ourselves a bubble boy for the months leading up and immediately after his transplant.
While in the hospital, Hudson enjoys examining his IV during the day and plotting how to remove it when he thinks nobody is looking. Turns out we have a very sneaky son...
The transplant team meets every Monday to discuss their cases. They will review the results of Hudson's exams, labs and CT's and determine his PELD score - this is the score that determines his place on the organ waiting list.
This means Hudson will officially be on the liver transplant waiting list as of Monday, January 23rd, 2017. From there, we wait.
Expected cry count: 2
Overall ugly cry count for the week (estimated of course): 15