Seattle, WA, USA

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Our #hillofajourney...

Let me catch you up

 

the beginning

To understand where we are now and where we are going, let me explain how we got here.
When I was 23 weeks pregnant, the ultrasound revealed that there were some abnormalities with Hudson's anatomy. It was then that we found out that Hudson had Heterotaxy.
Heterotaxy is when a person's internal organs are shaped or located differently than a 'normal' person. Prenatally, they could tell that Hudson's stomach was on the right side and he had some heart defects that they wanted to monitor. Our job at that point was to monitor the baby through frequent ultrasounds and tests and address any issues that may arise.
Since abnormalities were known prior to Hudson being born, the doctors had prepped Morgan and I that Hudson would immediately go to the NICU once he was born. I cannot thank the doctors and nurses enough for prepping us for this. I cannot imagine the fear and stress that I would have experienced had we not known this ahead of time.

2016

On October 27th at 16:09, Hudson was born and as promised, went to the NICU. The doctors monitored and evaluated Hudson with various ultrasounds and heart tests. The most immediate action they wanted to take was to perform surgery to avoid bowel malrotation. This was done to avoid Hudson's bowels and intestines from rotating around each other, cutting off the blood supply and begin to die. This was so critical because the bowels and intestines immediately start dying if rotated and if unnoticed, have a high chance of becoming infected and getting into the bloodstream. Once this happens, it is fatal.
When Hudson was 10 days old, they performed this surgery and while in there, the surgeons explored to see the condition of Hudson's other organs.
The surgeons were able to confirm a couple of things about Hudson's anatomy. They confirmed that his stomach is on the right, he has 6 spleens and that his liver was shaped and colored abnormally. They took a biopsy during surgery and sent it out for testing. In the meantime, it was our job to make Hudson comfortable and wait.
We spent another week in the hospital helping Hudson recover from surgery. The main concern turned to the fact that Hudson was not able to gain weight, his bilirubin levels were increasing (this is what indicates jaundice) and his poop was a very light beige. When we met with the GI specialist, he suspected it was Biliary Atresia. Biliary Atresia is when a person is either missing their bile duct or the bile ducts are blocked and bile is not able to leave the liver. He ordered a HIDA scan to help determine the next steps. Note: To those that do not know what a HIDA scan is, it is pretty cool. Hudson took medicine for 5 days prior to the scan and then the morning of the scan, they inject Hudson with a small dose of radioactive fluid and take images of his system digesting the radioactive fluid. This allowed doctors to make a 'map' of Hudson's liver, intestines, kidneys, etc... The HIDA scan confirmed that Hudson's liver was not flushing bile like a normal liver should.
This confirmed the doctor's diagnosis of biliary atresia meaning Hudson didn't have a bile duct to take any bile from the liver to the intestines. Why is this an issue? Bile acts as the vessel to take the nutrients and fats that the liver processes to the intestines so the body can continue to absorb and digest. When there is no bile, there is no nutrition or fats getting to the body to grow and process.
The first method in managing biliary atresia is to perform a surgery that bypasses the bile duct (or where the bile duct would be) and attaches the liver directly to the intestines so the liver can drain bile directly into the intestines. We got the green light from Hudson's cardiologist (due to the existing heart abnormalities) that his body could withstand surgery so we scheduled surgery for the following week. It was imperative we performed surgery quickly because research had shown that if this surgery was performed after 8 weeks of age, the chances of success were very low.
On December 2nd, Hudson underwent surgery to attach his liver to his intestines. The surgery lasted between 6-7 hours - the longest 6- 7 hours of Morgan and I's life. The surgery went well however, the surgeon mentioned that when they cut into the liver, the ducts that would drain into the intestines looked smaller than usual so we would need to stay on top of antibiotics and steroids to ensure the ducts did not become blocked due to scar tissue or constricting due to infection.
We were discharged a week later. When we got home, Hudson was not acting like himself and pretty much stopped eating and throwing up what food we had forced him to take.
We went to the doctor on Monday morning and it was discovered that Hudson had dropped down to his birth weight and was severally dehydrated. He was immediately admitted back into the hospital and began blood tests to confirm that he had gotten an infection. The blood tests confirmed this and they started a 7-day antibiotic treatment via IV and we remained in the hospital for the entire 7 days.
We were released from the hospital a couple of days before Christmas. We finished 2016 with 3 hospital stays and 2 surgeries.

2017

In January, we had to go to the ER as Hudson was breathing heavy, had a temperature and throwing up. We were transferred via ambulance to Seattle Children's. While being treated at SCH, Hudson went into Septic Shock and required emergency services. This was two days prior to our scheduled transplant evaluation with SCH. We went through the transplant evaluation process while inpatient and Hudson was officially listed on the UNOS waiting list. And then we waited. And waited. 

We immediately researched the living donor process and knew it was the right direction for Hudson and our family. Making this decision is incredibly personal and difficult. For us, living donation allowed Hudson to go into surgery while he was still relatively healthy which meant he would likely handle the surgery and recovery better. Finding a perfect match is rare but we were incredibly lucky to have Hudson's Uncle Trevor - the first person we even had evaluated. 

July 10th, 2017 was the first day of the rest of the Hudson's life. After an almost 16 hour surgery, surgeons successfully transplanted a portion of Trevor's left lobe into Hudson. 

Post-transplant there were multiple hiccups so we ended up spending 40 days in the hospital until we were able to bring Hudson home. We spent the remainder of 2017 juggling clinic visits, labs, and finding the perfect combination of meds.