Thursday, January 29, 2015

Big kids medical update

Adam and Sara had a routine ultrasound last Friday and visit with their Pediatric Urologist, Dr. Rhee. We are now on a first name basis with that ultrasound tech. I can't even remember how many times he has put jelly on the belly of all THREE of my kids! They were especially goofy that day so it's a good thing Matt is used to us. I think I caught him a little off guard because it is routine to collect a urine sample for those ultrasounds. He was putting the label on the sample cup and I said "Umm, I'm not doing a sample today for Sara." He said "You're not?" I replied "No, we just did a sample a few days ago when we were worried about a UTI." Then he was putting a label on a 2nd cup and I said "I'm not doing a sample for Adam either." Oooookay. It is very uncommon for boys to get a UTI and that is what they would be testing for. I don't really like to do extra things but I'm sure there aren't many parents who make those kind of decisions.

The other funny thing that happened was that Matt couldn't find Sara's bladder for a few minutes. He takes quite a few ultrasound pictures and then he needs pictures of her bladder both full and empty. She peed so much out he couldn't find it! We were laughing pretty hard and I don't think he knew what to do. Finally after 3-4 minutes of searching, her body processed a little and he took a photo. The report indicated her empty bladder had less than 2mL in it!

Then we headed to Dr. Rhee's office to discuss the results. The kids have been doing fantastic. Sara's most recent blood work with her kidney doctor showed everything status quo so I wasn't expecting any curve balls.

The kids just love the fun tables in his office.

First we discussed Adam. He has always been the easiest to talk about. He is a text book case. He is about 2 years post surgery and it has been about a year since his last ultrasound. His healing is going very well. His kidney is still a little dilated. I expected him to be released from follow up. But Dr. Rhee said another ultrasound in 1 year and then an ultrasound every other year until he is full grown! This completely surprised me and I don't recall this kind of follow up ever mentioned before. He needs to continue to monitor Adam's kidneys as his body grows to make sure the scar tissue doesn't change and the blockage returns. There really would be no other symptoms other than seeing it on an ultrasound.

And then there is Sara. *sigh* The first words out of his mouth were "There has been significant change since her last x-ray 18 months ago." I am glad I called his office Monday and suggested an x-ray. I was so shocked I didn't really know what to say. I gathered myself as he walked me next door to where the images were on his computer screen.

The first image is of her x-ray in June 2013.

There is a little shadowing of remaining stones after her lithotripsies but not much. The next photo was the x-ray from last Thursday.

I have put a red circle around the kidney stones. 6 on the right have become more calcified and there are a few on the left, as well. All of them on the right measure 6-7mm or about 1/4 inch. It is this image that has remained ingrained in my mind over the past week. The last thing I see before I close my eyes at night and the first I see when I wake up. As I go about my day, it feels ever-present. To say it took my breath away is an understatement. But I gathered myself to ask questions. Dr. Rhee shook his shoulders and said "We are in uncharted waters." Honestly, we have never been in charted waters. 

"The stones being more calcified means they are harder and may be easier to remove robotically, whereas in Boston they were soft and kept breaking up when the robot would try to grab them." I thought you didn't want to do surgery because her kidneys might not survive? "Well, we can't leave the stones in there now that they have changed so significantly or they will destroy her kidneys." So surgery might destroy her kidneys but the stones will. Not good options to decide between.

"At this point my recommendation is to get another VCUG in the spring to check on her reflux. If it still exists, I would plan for robotic surgery to correct the reflux and remove the stones that are most prominent. But I'm just giving you information so you can decide what you want to do." We still don't have any idea why her body is making stones. No lab work appears abnormal. She does not have a diet high in salt. She drinks a lot of water and is very active. She just continues to be a mystery to all of her doctors. You would think someone would want to use her as a research project!

We gathered our things and headed for a treat to celebrate how well the kids did during their visits. Adam chose a cake donut with chocolate frosting and sprinkles. Sara and I split a chocolate frosted, white cream filled donut. And some applejuice. Then Sara and I had a conversation I will never forget.

Well, Sara, that wasn't the news we were hoping for. "No, Mama, it didn't sound like it." I guess we need to just keep praying. "I guess we need to pray for a miracle, Mama."

My mind can't even comprehend how she can run and jump and giggle and be on the top of a cheerleading pyramid yet inside her body is this hidden disease that we didn't even know was growing again. Sometimes I wonder how old she will be when she will need a new kidney. Seeing her with Evan makes me yearn for a child of her own someday. I know she is only nearly 6 but going thru all of this makes me process things much differently.


Over the past week I have...
Tracked down the doctor who performed her surgery in Boston as he relocated to Arizona and has not started practicing yet. He is going to touch base with Dr. Rhee and schedule a phone call with me to get up to speed and provide a second opinion. He is considered the best of the best.

Talked to Sara's nephrologist and asked him to re-review all of her lab work to see if something has been overlooked. He has a colleague in Chicago that he is going to contact for a second opinion. I am considering calling Boston as the children's hospital out there has a Pediatric Kidney Stone Program.

Talked to Samaritan Ministries, our Christian health sharing program, to see how they wanted to handle these most recent visits and moving forward to next steps. We do not have insurance so there are additional steps we have to take with medical costs.

Received copies of all Sara's medical records and images over the past 2 years.

Looked at the calendar for tentative times for a VCUG procedure without missing school.

As for that miracle that Sara mentioned, that is next on my list to ask for. Every. Single. Day.