Those stupid three steps forward

We had two big appointments this week – one with urology and one with gastroenterology (the liver doctor).  First was urology…

We already knew that the renal scan showed 83% of the work being done by Lincoln’s right kidney and that Lincoln was likely to need surgery.  The urologist confirmed.  The left kidney is doing 17% of the work and 10% is the urologist’s cutoff for function that is too low to salvage the kidney.  But at 17% he thinks he can save it.

The urologist believes Lincoln has a UPJ (ureter-pelvis junction) obstruction.  Here’s a little science lesson for you…The UPJ is the spot where the ureter meets up with the kidney (the pelvis is part of the kidney, not the pelvis we’d usually think of).  When the ureter is formed it starts at the bladder and grows up to the kidney.  While it’s growing it’s not a hollow tube yet – it’s solid.  It becomes hollow later.  A UPJ obstruction happens when the hollowing out process for some reason isn’t complete.  The urologist fixes this by removing the part of the ureter that isn’t completely hollow and reconnecting it to the kidney.  The surgery has a very high success rate and according to the urologist is relatively common in his world.  The hope is for Lincoln’s left kidney to return to full function.  Lincoln goes in for surgery on February 27^th then will be in the hospital for monitoring afterwards for 2-3 days.  We’re not exactly looking forward to the surgery, but are ready for it to be done and over with so we can move on.

Then came the gastro appointment…you know what they say about 3 steps forward and what they lead to…

Every time we have a liver appointment Lincoln gets blood work beforehand.  This past week the blood work showed his liver function levels at the worst they’ve been to date.  You might remember that we were hoping for direct bilirubin levels around 4 or so.  His last test showed direct bilirubin a little above 5.  The highest he’s ever had was around 8.  This time we were above 11.  His ALT and AST (measures of liver inflammation) had doubled since last month.  We also had our first abnormal INR reading, which is a measure of blood clotting and another test of liver function.  Previously Lincoln’s liver hadn’t shown any signs of enlargement or hardening (cirrhosis) when the doctors felt it, but now it does.

So what now?  We’re back to blood work every two weeks instead of once a month.  We’ve upped Lincoln’s vitamins and liver medicine.  The doctors will keep an extra eye on the blood clotting factor, especially given his upcoming surgery.  If it gets worse they can give him a shot of vitamin K, since vitamin K is one of the vitamins Lincoln has a hard time absorbing and also is a big factor in blood clotting.  The INR reading wasn’t bad enough for the liver doctor to put a stop to the kidney surgery.  He'd like that kidney to be healthy sooner rather than later.

Now that we have signs of liver hardening and elevated bilirubin we also had to have a discussion with the doctor about new things to keep an eye out for.  He told us when to call him and when to get to the ER.  He explained that he wants the kidney fixed before the liver gets too bad in case Lincoln ends up needing a liver transplant.  It’s better to be as healthy as possible in all other aspects when going into a transplant.  Yep, fun conversation.

Going through that appointment was an odd experience.  On one hand, we’re a little bit used to medical issues and appointments so we knew how to react.  On the other hand, Lincoln was doing so well that this felt like it came out of the blue.  I knew he was looking more yellow and had seemed like he wasn’t feeling great for a few days before the blood work, so I wasn’t expecting his bilirubin to have dropped.  But I wasn’t expecting 11.  That caught me off guard.  I felt like our three steps forward was followed by four steps back. 

But Lincoln seems like he’s feeling better today, he's still eating great and has been smiling and laughing, so all we can do for now is keep hoping for the best and keep having fun with him.  Through everything he just keeps being so much fun, we couldn’t have asked for a better baby!  Hopefully the increased liver medicine dosage helps things and we can get back to our baseline levels soon.  Any good thoughts or prayers you want to send our way are appreciated!