Sunday, March 3, 2013

Our medical mystery

That would be Sara.

She had her second lithotripsy on the left on Valentine's Day. It was Shannon's turn to walk thru the process alone because I was sick with the flu. This one was a little harder on her, we think because she was just getting over the flu herself so she was pretty wiped out.

Adam's post op nurse a few days ago was the same one Sara had. We were laughing about how different the kids are. She held a pain scale paper up to Sara and explained the different faces, then asked her to point to which one she was feeling. Sara pointed to an 8. The nurse asked if she wanted her dad to come back and she said "No" pretty indifferently. High tolerance for pain and deals with it well!

Dr. Rhee and Dr. Nguyen from Boston consulted. The plan was to shock the left again to break things into very very tiny pieces and then pull the stent, hoping they would all pass. They wanted to get her left side nice and clear before determining next steps for the right side, which was being more stubborn. I took Sara for her follow up x-ray Wednesday night last week and then we all ate dinner in the cafeteria at the hospital. So strange to be there with the kids when I remember vividly being there alone and blogging about how their NICU day was going.

By the way, she didn't want stickers after her x-ray. Instead she picked "Lizzie"...

When I saw Dr. Rhee pre-surgery I told him the x-ray was done and we were supposed to see him the next morning. When we met in the conference room post-surgery, we finished discussing Adam and then moved on to Sara. I was expecting great news about how the left was clear and then probing for what we were going to do about the right. I should know better than to have expectations, especially with Sara. He said there is still a lot of shadowing on the left so either the stones aren't passing or they are coming back together to form one big stone again. He wasn't sure. When you hear unexpected things like that you have to compose yourself in the time it takes to blink and swallow. I asked him if he was going to tell me she needed robotic surgery again since the lithotripsy wasn't working. He honestly answered that he didn't know, but he certainly wouldn't put her thru 10 hours again. He was going to have the x-ray emailed to Boston to consult and get back to me next week. There has been no change on the right--still 2 stones and the previous lithotripsy did not break them up. At this point he is leaning toward leaving them alone. Inside I thought Excuse me? He said they aren't causing her any problems and nothing we are doing is helping.

I don't know but everything inside of me says that is an unacceptable option. The stones aren't bothering her now but they will eventually. And they will affect her kidney function. And he won't even consider surgery for her reflux until the stones are out.

We keep forging ahead and living a normal life. Granted that means every day Sara plays Mama to her babies and they are sick, needing some kind of shot or x-ray, but hey that's normal to her! This journey so far since August feels like it has been so long. But looking ahead, we really haven't even begun the lifelong journey in dealing with her chronic kidney disease. I told someone the other day that I need to figure out how to have endurance with energy because right now I am just weary.


Jenny said...

Poor Sara....and poor Mama and Daddy! I continue to keep you guys in my thoughts and prayers.

Heather said...

Hang in there, JoLynn. I hope that you find some answers soon. I can only imagine how tired you are of all of this -- but you are doing an amazing job being there for your babies!