Alan was born in November 2006.
He cried. A lot.
At first we called it colic, even though he didn't exactly fit the 'classic' symptoms of colic. He was also a little jaundiced. On him it was more of a pretty olive color than yellow, so it was hard to notice. Especially at first. There were also a couple of digestive issues - some things that were just "not right".
He cried. A lot.
At first we called it colic, even though he didn't exactly fit the 'classic' symptoms of colic. He was also a little jaundiced. On him it was more of a pretty olive color than yellow, so it was hard to notice. Especially at first. There were also a couple of digestive issues - some things that were just "not right".
At a visit to the pediatrician when Alan was 9 weeks old, the dr. decided to run some extra blood tests "just to be sure" nothing major was going on. When we got home that evening there was a message on the answering machine from his office letting us know they had results, but by that time it was after closing time.
I called first thing the next morning and was put through directly to the pediatrician. Even in my inexperience, my gut told me that was a bad sign.
I was right.
The doctor explained some of the results had come back abnormal, which could point to some "plumbing issues" with Alan's intestines. He was in touch with our nearest Children's hospital to give us a referral to a gastroenterologist (GI).
When that appointment ended up being the very next day, our hearts sank a little more. Without knowing any specifics, the internet wasn't much help, and the most we could to was wait. That was a very long day and night.
Greg, my mom, and I set out early the next morning in freezing rain with an infant Alan for the 100 + mile trip to Children's.
By the end of the day, Alan had had a sonogram and bloodwork, been seen by a GI, and was being admitted to confirm his diagnosis.
To say this was new territory for us would be a massive understatement. I think we all 3 bit back tears (and the urge to turn and run) as we were led into a child's hospital room. A metal crib? Cheerful wall-paper? All that medical equipment on the wall? It didn't fit. It wasn't right.
But it was.
That was a Wednesday. On Thursday Alan went in for a liver biopsy, the results of which pointed even more strongly toward a diagnosis of Biliary Atresia (BA). (In short: a withering of the bile ducts leading away from the liver. The liver cannot drain bile and is subsequently poisoned, which leads to cirrhosis.)
Surgery - the only way to truly confirm a diagnosis of BA - was scheduled for the following Monday. I don't know what we did all weekend. I do remember it was around this time we saw Alan's first smiles. They were like seeing sunshine through the rain.
We didn't know what to pray for as far as the outcome of the diagnosis. At that time we knew so little about BA. Was that the diagnosis we 'wanted'? Were the other possibilities better? Worse?
We prayed for Alan's safety through the surgery and the wisdom of the physicians. We heard fairly quickly, that yes, Alan did have biliary atresia, and the surgeon was going to proceed with the only treatment there is - a kasai procedure.
Alan recovered well from the surgery and we left the hospital 9 days later with our 11 week old baby. He had a scar, a handful of prescriptions, and liver disease.
We were in a whole new world, and would never again be the same.
