Wait, what?

My Little Bear,
Yesterday was the day.  We met with your doctor around 10:30 and there were not many results from the weekend to discuss.  Overnight, they did the big panel of tests to see your blood counts, your liver enzymes and all the normal stuff.  So when we talked with your regular doctor, we got the info from him that most everything had just stayed put.  No big changes but a few small victories and certainly we  can be excited that nothing went in the opposite direction.

We discussed that the pediatric GI doctor had a local surgeon that she would recommend, Dr. K.  He has experience with doing the combo surgery that we would need to consider for you - a liver biopsy as well as a different dye test that would show any malformations within your network of bile ducts leaving your liver since they still cannot rule out biliary atresia.  They could also do the procedure to correct any problem that they found at the same time.  It could be a very simple surgery or it could turn into something really complicated.

The impression we got was that this surgery would need to be done within the next week to 10 days if possible, and that if the surgeon she recommended was not available here in San Antonio, then she would probably recommend that we go on to Texas Children's Hospital.  The only downside is that when you are transferred from another place, they typically want to rerun all the labs and maybe even a few of the tests just to confirm with their own results, which could mean we would spend a whole other week just sitting around waiting before any progress is made.

So we finished that discussion and were thrilled to have the distraction of your Grandpa making a super fast visit.  When he and Gigi met you the first time, it was a quick trip and he was a bit nervous to hold you since you were so small and had wires hooked up to you.  He wanted to make sure that he got to hold you this time, and he got to help Daddy feed you a good lunch too.

We had a few hours of time to kill in the afternoon and then had to be back up at the hospital around 6:00 to meet Dr. B (the GI doctor) for the first time.  We were very blessed that the Warshaks graciously offered to let your big sister come hang out for a few hours and play with all their kiddos so we could talk with just us grownups.  (Still amazes me that people who have three children of their own always say "What's one more?  Bring Cameron over!")

And the conversation with Dr. B went exactly the opposite direction of where I thought it was going.

Bo and I both agreed that we really like her and that if you did have to do follow up later in your life, she would be great to work with.  We assumed that she was going to tell us the same thing about the local surgeon and the timeframe that everything would need to happen in.  But instead, she told us there was no hurry.  No rush to put you through the biopsy until we absolutely have to.  She said you seem like you are doing great and eating well, and that she honestly doesn't think you have to have lab tests run from the hospital every day.  She even said that if your numbers don't go in the wrong direction, she doesn't see why you couldn't be DISCHARGED and just go home, with us bringing you in a few times a week to be monitored and run blood work.  This Mama's ears thought it all sounded too good to be true.

We were sort of stunned.  I certainly don't want you to have any surgery until it is the absolute best thing.  But I will admit that my heart was getting ready for some action.  For us to be doing something, rather than just circling from home to the hospital every day with a feeling of helplessness.  And now to hear her say "wait one more week" was just confusing.  I thought that is what we just did!  Which made me feel guilty for not being more thankful.  I should be thrilled that the answer was wait!

Even this morning, I am a little confused over whose advice we are following now.  I guess we will talk with your regular doctor again as soon as we see him and make sure that he is on board with all the things that Dr. B suggested.  Which means you have another week to keep working and growing.  If Dr. B is right, then your blood antibodies are the root cause of the liver getting backed up, and that means there is still the possibility that once those antibodies die off (could be between 6 weeks and three months) that your body will be better able to regulate all the things you need to process out.  We know you can do it!

So here is the verse that I will be thinking on today.  Psalm 37:7  Be still in the presence of the Lord and wait patiently for him to act.  Waiting has never been my strong suit.  I want to feel like I am in control, and waiting forces me to realize that I am powerless and dependent even more on God's grace. But what good is my help when God made you and knows you?  I will keep reminding myself that we are thankful, we are humbled, and we are in awe of his power and mercy.

Loving you,
Mama