Whew! From a 5:00am alarm this morning, it has been NON STOP until I just plopped down to relax for the first time at 10:15 at night. (I had to lead worship team music practice for our church just a few minutes after we got home tonight.) So exhausted, both physically and emotionally. But I will keep my promise to you, oh faithful blog readers, friends, & family, to give you the update from our morning at Duke...
It was what we expected. And for our first visit with a new doctor, I think it went as well as it could. We weren't expecting answers today. I knew that would pretty much be an impossibility. So after I talked through the timeline of events & symptoms to the pediatric gastroenterologist & showed her pictures of Caroline before the hairloss as well as throughout the past 10 months, it wasn't a shock to me when she took a deep breath and said, "You're complicated. I'm going to have to think about it some more."
We liked the doctor. She listened well. She asked good questions. She seemed interested (and somewhat perplexed, as did the 2 resident med students that were shadowing her today) but willing to help us.
She was curious to hear what a dermatologist had said about Caroline's skin issues since so many of her symptoms involve hair and skin. But the problem is that when we realized in the beginning of this process that the hair and skin issues were likely a RESULT of an intestinal issue, we headed straight for doctors that could address that root problem. So she said she could refer us over to the dermatology department if we wanted. I wanted to bed & plead and say, "You're DUKE! Can YOU just call them up and tell them to get OVER here and let's all sit down in the same room together and look at my daughter's ENTIRE body as ONE UNIT?!?" It's so frustrating sometimes how specialized doctors have to be nowadays-- they can sometimes lose a wholistic view of the body.
Anyways! She definitely saw the connection between the hair loss, skin, and gastro issues, so that was good. (she said there was a tiny possibility they were two separate things, but that was very unlikely) And as we talked, she asked if we had taken certain blood levels of this or that, to which my answer was usually "no." I told her that's why we were there-- we wanted to do a COMPREHENSIVE testing to make sure there wasn't something that we are missing. So she and I collected a list of things we wanted to test for... 31 levels by blood, and 4 types of stool tests!!!! (thankfully Miss Caroline pooped for us while we were there, so we were able to send off 3 of the 4 tests today!! woohoo! Although it was, of course, a great diaper, so I don't know if anything unusual will show up.)
When the woman who took the blood started pulling out vial after vial after vial (I think I stopped counting at 8, but Marc said it was about 12) and said "This is gonna be alot of blood," I knew I had to politely step out of the room. :) My husband is a saint, especially in situations like this where I am totally the type to turn white as a ghost and pass out on the floor from anxiety. So as I headed to the waiting room and heard my sweet girl screaming at the top of her lungs behind me, oh, it was terrible. Marc said they missed on one arm several times. (ugh! And after I TOLD her about our past bad experiences with getting blood!) Then they prayed together (at the woman's suggestion!) before trying the other arm. Praise Jesus he answered that prayer. They got the blood. Although Caroline was not able to calm herself down one bit during the entire ordeal. Thankfully when I saw her a few minutes later, she was happily picking out a coloring book and stickers, safe and sound in her Daddy's arms.
"Mommy, I got a BANDAID!! It's so colorful!!"
So it will be interesting to see what we find out from all of these tests. She is checking EVERYTHING: vitamins, minerals including zinc again, basic metabolic functioning, thyroid, iron, a celiac antibody test AGAIN to see what happened to the levels over the past 6 months on a gluten free diet, etc. etc. Some of the results will start coming in on Friday, and some will take longer to know. We are eager to know what they'll say (if anything) and I'm, of course, wondering where this will lead us in our journey...
So overall I think it was a good visit. Nothing revolutionary, nothing resolved. But we cast the net wide and I guess we'll see what kind of fish show up and go from there. I'm just so glad it's over and maybe my own anxiety can take a rest!
First RUF of the semester is tomorrow night at our house! Must rest up to be ready for 40-50 college students to pack into my basement! Thank you all again for your prayers & encouragement for us today. It is always so nice to hear from you & know that people are supporting you, even from afar. Let's hope that this testing might lead us in the right direction. (or even confirm the direction we were already taking??)