Alan's Story, Part 2

Alan was just shy of 3 months when we returned home and began life with liver disease. Or, more accurately, life with the knowledge of liver disease. He had always had it. But now we knew.
Knowing changed pretty much everything. It meant weekly trips to the hospital for heel-sticks to check Alan's liver function and bilirubin levels, and frequent visits to the pediatrician to check his weight gain.

Knowing brought a very large, looming question mark into our lives. The surgery Alan had (a kasai procedure), is the only treatment for biliary atresia (BA) and has no guarantees. A surgeon does his best work, and then everyone waits. Ideally, it will work immediately, wonderfully, and for a long time. But this is rare. More often it works okay, or for a little while. Sometimes it doesn't work at all.

Only time would tell. And so, our first wait began.

We would find out later that when Alan went back to Children's for his first post-surgery follow-up in February, his team considered him a very sick baby with a failed kasai. Thankfully, they didn't tell us that at the time, and we rejoiced over every little baby step he made. If his bili dropped 2 points (instead of the needed 10) we celebrated.

And little by little, Alan's blood work showed improvement. Week by week his yellow skin and eyes lightened. God was answering prayer. Not only was He giving Alan liver function, he was carrying us through what could be a terrifying time with peace and strength.

At Alan's follow-ups in March and April his team was amazed at his progress. His labs looked great. His weight gain was right on track. (Nutrition is a big concern for liver kids.) We were beginning to wonder if we might be one of the lucky ones whose kasai would last for a while.

And then we were reminded of how fast liver disease can turn.

Three days after the April visit to Children's we discovered Alan's tummy was filling with fluid, a common symptom of liver disease. The change came so suddenly that even his excellent team at Children's didn't quite seem to believe it and instead of seeing Alan themselves, they had the local pediatrician follow him for a couple of weeks.

Sure enough, the trend continued, and after 3 weeks Alan's little tummy was swelled like a balloon, his skin pulled tight across it and his belly button popped out from the pressure.

We were asked to return to Dallas a full 3 weeks earlier than scheduled - the first time (of many) an appointment would be moved up. We were nervous going into that appointment. We felt pretty strongly this would be a significant step in Alan's journey.

We were right.

Alan's doctor explained that a fluid build-up (ascites) generally signals the end of a working liver. Once you've reached that stage you don't go back. Things don't get better.

So just three weeks after a glowing report, we learned that it was time to list Alan for transplant.

Our minds were reeling, but there wasn't a lot of time to dwell on it all, because things began moving rather quickly. The next week we went through the detailed, 2-day process of being evaluated for transplant, and the following week.... Alan went on the list.

Thankfully, all this hurry was due to the way Alan's team likes to do things, and not because Alan was in dire shape. Their preference is to get a kid listed as soon as they see a need, and not have to scramble later if a patient makes a sudden downturn. Since we had seen first hand how quickly liver disease can progress, we were very happy with how timely things were done.

Since Alan was so relatively healthy for a baby needing a new liver, the hope and plan was to wait as long as possible before accepting an organ offer.

But going on the list wasn't the end of the spring's whirl-wind of activity. The day Alan went on the waiting list he was also admitted to the hospital for the first time since his surgery:

His failing liver was finally taking a toll on his nutrition, and it was time for a supplementary formula.... to be administered through a feeding tube in Alan's nose. (NG tube) I was trained on how to place the tube and use the feeding pump, and we were sent home.

After that, time passed pretty uneventfully for Alan while he waited. He was admitted to the hospital three times: once immediately after getting his feeding tube (a fever, probably a reaction to a vaccine he had received), and twice in November (the Fridays before and after Thanksgiving). (You can read about those 2 stays here and here.)

The months spent waiting fell into a fairly predictable pattern. Alan didn't sleep well. He never had. He had to be held - a lot. And he woke up - very often. Because of the ascites and the NG tube feeds that lasted around 10 hours overnight, we propped him up to sleep.

Alan also didn't eat well. Sometimes he would try a bite of this or that to be a good sport. Usually he would pinch his lips shut and turn his head whenever food was offered. He would have a favorite that would last for a little while, and then he'd give up on that, and maybe move on to something else.

He also took lots of medicines and vitamins. Getting the NG tube was a blessing when it came to those meds, because he didn't have to taste them anymore. So even when things were going great, liver disease still followed us. No matter where we went or what we did Alan still didn't eat or sleep well, and still took a handful of medicines and a stinky formula through a tube.Finally ... after 7 months of our holding pattern, we got The Call. The call that would change everything. The call that said some family, somewhere, had experienced an unimaginable loss and had decided to give through their grief.

In the middle of the night, we called family members, loaded up our baby boy and drove away.

The next 20 hours stand out in vivid detail, and are followed by 9 days of blur.

And then came the tenth day - a day I will never ever forget.

Click here for Part 3