Friday, November 9, 2012

Boston Bound?

Last week Sara had her 3 month routine follow up ultrasound, blood work, and urinalysis.

Once again, Sara's actual draw of the bloodwork was a breeze. The nurse asked if I needed someone to come in to help hold her arm down. Ummm, no? Sure enough, Sara sat on my lap again still as could be and didn't wince or let out even a whimper when the needle went in. She even had to poke around a little to find the vein. So proud of my brave girl!  

The nurse at the kidney doctor's office called regarding Sara's labs. The bloodwork doesn't look great. It's not the worst it could be and it's pretty similar to her last labwork 2 months ago. However, there continues to be protein in her urine and he is very concerned about that. The doctor would like to see us next week instead of in December like he had planned. When I originally posted about Sara being diagnosed with chronic kidney disease, I listed some factors that the doctor would monitor every 3 months as indicators of kidney function--her blood pressure, her growth rate, and protein in her urine. High blood pressure indicates the kidneys are working harder to perform. Slower growth rate indicates the kidneys are not functioning as well as needed to continue an upward path on the growth chart. And levels of protein in her urine are also a sign of poor kidney function. We go on Thursday next week to discuss this further with him.

The ultrasound at the hospital was extremely lengthy. Not only do they have an entire list of images they are required to capture but she also had to take extra time to stop and take pictures of the larger stones and measure them. Previously we were told Sara had 2 large kidney stones in each kidney. At one point during the exam I looked up and saw 3 large circles on Sara's left kidney. The tech stopped at the first one, captured the image, measured it. Then she focused on the 2nd one. I knew what she was doing. They usually remain pretty quiet because they can't share information but since I already knew Sara has kidney stones I just asked "Which images show the kidney stones?" The tech paused and said "They are all over." She confirmed that the 3 circles I was looking at were stones and then there was a long narrow bar of them clustered together, as well. My heart sunk but in those moments, you have to be "normal" for your child.

We headed over to the urologist after the test to discuss the results with him. Shannon met me there from work and his mom was with us so we didn't have to discuss things in front of Sara. We opened the door of the office to standing room only. 90 minutes of waiting before we got back to see him. He was very frustrated and explained 3 of his nursing staff called in sick and they just couldn't process patients fast enough to get them back to him. By now it was lunch time and thankfully Grandpa George was on his toes to realize Adam would be hungry so they slapped some lunch together after a busy morning of working in the garage together.

The urologist indicated the ultrasound was comparable to last time but he still was perplexed by Sara's kidneys and used the phrase "we are entering new territory." We asked about surgery to fix the reflux because we felt it is too risky to her kidney function if she gets another UTI. He doesn't want to do reflux surgery until the kidney stones are addressed because if he does, it may make it harder to do something with the stones. But if she has 1 more UTI the reflux surgery will be immediate. The urologist mentioned again he thinks the stones are from when Sara was in the NICU and the meds she received. I'm so glad he mentioned that because I had forgotten we didn't have a chance previously to tell him we researched that with one of the NICU doctors and Sara did not have any of those meds. He looked at us stunned, "You're kidding? I don't know what to think now!" I greatly appreciate his honesty but that's not exactly what you want to hear.

He felt like he still wasn't getting a clear enough picture of the kidney stones to form a plan so he ordered us to go right over for an x-ray. By the time we got home that day Adam was already up from napping! I think we were all exhausted but I was thankful Shannon's parents had come to help.

The urologist contacted me Monday and said the x-ray did not show enough of what he was hoping so he wanted Sara to have a CT scan. Initially we were using this as a last resort because of the high levels of radiation she would be exposed to and he wanted to protect her. He spoke directly with the radiologist so they knew exactly what area to focus on and to keep it very limited.

In the meantime, I felt the need to begin researching things more myself. Late Monday night while Shannon was in bed, I did some internet research and found that Children's Hospital Boston has a Pediatric Kidney Stone department. I read everything on their site and called them on Tuesday. The nurse said I could send all of Sara's records to them and the doctor would review it. Then he would notify us as to what kind of appointment he would want to do but they would not do a phone consultation. However, they would consider a physician to physician phone call if our urologist would like some input. I held onto the information to discuss it and hoped he would be open if it was needed.

So yesterday we headed back to the hospital for the CT scan. Sara's eyes got a little big when she saw this big contraption. She laid down on the table and rested her head on the pillow while they brought her a warm blanket. They raised the table up and slid her halfway into the tube to position her properly. They laid a protective covering over her mid section and the nurse put a protective vest over me. For a moment, I wondered if all of this was going to affect her ability to be a mommy some day but I had to let that be a passing thought. I held on to her hand and the table slid into the tube until just her head was poking out, it made a whirring sound like an airplane starting up and you could see it spinning thru a little window pane on the machine. Then the bed came out, then back in, then out, and back in. She got real quiet and her eyes were like saucers but she didn't move a muscle.

I met with the urologist at 8am this morning to discuss the results. Adam was hanging out with our favorite neighbor for a bit. I was running late so she told me to just send him on over and she would watch for him. There he was in his PJ's, jacket, and crocs with a back pack strapped on hiking across the yard all by himself. When did he get to be such a big boy? I stood there for a moment as I watched him walking off and the neighbor came out and waved. I wished I had captured that on camera because it was reflective of how independent the kids are getting already!

Thankfully there was no standing room only this time! We got right in and...surprise they had another room with a cool exam table we hadn't seen yet - a bus!

Sara was very excited and wanted to hide her pez dispenser in one of the cabinets but the doctor came in too soon.

The urologist was very thoughtful and asked if it was okay that Sara was there because he knew last time I didn't want her listening in. I told him it was okay. The first words out of his mouth were "I told you before I didn't have a plan. I still don't have a plan." Then he asked to borrow my tablet of paper that had my notes for today's discussion so he could draw me a picture and help explain. Finally - this has been the most helpful information!

I am not sure why the picture is rotated that way but anyway...the picture on the left/top is a typical kidney that has kidney stones. The large circle in the center is where the stones are located and usually the opening of the tube where the kidney connects to the ureter is quite enlarged. That would be option A - surgically he would enter where the line with squiggles over it is and remove the stones. However, you can see how he drew Sara's kidneys on the right/bottom. Her connection point is not enlarged. It is small/normal sized and the stones are intruding into the opening of the tube leaving the kidney. This is not an option because her opening is just so small that he can't enter that way. 

Option B would be to do surgery like for an adult. That would involve inserting a tube about the size of a pen into Sara's side and removing the stones that way. Sara's kidneys are about 1/5 the size of mine. The urologist did find that they make a child-size instrument but the company makes about 5 per year and he would only use it 1 or 2 times per year so of course his recommendation to the hospital to purchase one has not gotten feedback. If he used an adult size instrument it would destroy too much of Sara's kidneys.

Option C turns my stomach. He would open Sara up, remove the kidney and hold it in his hand. Then he would cut it open like fileting a steak and reach in with his hands to remove the stones. This would be his most preferred method. If excessive bleeding happened, he would have his hands right on the kidney to repair it. If Sara only needed stones removed from one kidney he would go this route because if too much bleeding happened and the kidney died, she could survive on one kidney. It doesn't sound like it but it is also the most careful to her kidney. However, both her kidneys are in the same shape and it's just not an option to do this to both kidneys.

He told me he has been consulting with other doctors locally and they all agree that there isn't a good option. We are welcome to go to Chicago for additional consultations. Then he said "I also have a colleague in Boston that I am considering discussing this with." Really? I have been doing some research about Boston and their Pediatric Kidney Stone department. I like the idea that you know someone there so it could be a collaborative effort. In the end, he wants Shannon and I to be comfortable with a solution we choose and he is completely open to consulting with some outside resources. I asked if it would be easier for me to get Sara's records or for him to. He decided that if I went to the hospital immediately and picked up the CD of her images, I could bring it back to him and he would send it to be received by Tuesday. Then he said "Wait! There is a team here from Boston right now! They will be at my office at 9am for some meetings and then they are flying back this weekend. I can have them hand deliver it and tell my colleague to call me as soon as he reviews it." He left the office and picked up the phone to call the radiologist and put a rush order on preparing the CD. Then he told the receptionist at the front desk to not even check me out so time wasn't wasted - I would be right back! I think he was about as excited as I was. Within 15 minutes I had driven to the hospital, gotten the CD of all of Sara's records from both ultrasounds, her VCUG, her x-ray, and her CT scan, and was back at the urologist to drop it off.

I can't tell you how encouraged I am about discouraging news. Each time we meet we learn more about how unique Sara's situation is. It is very hard to keep that in mind when you look at her from the outside and see absolutely nothing different about her. I think God was woven into every step of this working out this way. From me researching more and finding Boston, to the urologist initiating the conversation and actually having a colleague out there, to a team from Boston being in town and able to get Sara's records delivered so quickly. I am expectant that our prayers will continue to be answered and we will find some positive news with the Boston colleague. Maybe that hospital will at least have the smaller instrumentation to perform the Option B surgery.


Ryan said...

Thank you for sharing "the whole story" with us. I'm glad your discussion went well. Nice for you to have a direction and to see God in the details. God IS good all the time. Your faith continues to be a pillar of strength not only for you and your family but for me and mine. Your journey and your actions are inspiring.

Jenny said...

Wow! Thank you for sharing your story. I will be thinking and praying to Sara and that you are able to find out the best information to help you make your decision.