Wednesday, November 21, 2012

Boston Bound!

What a week it has been. My last post entitled Boston Bound was followed by a "?". If you notice this one, it is followed by an "!".
It was one week ago today that I spoke with our urologist about his discussion with his colleague in Boston, Dr. Nguyen (pronounced "Wen"). After reviewing Sara's CD of information, Dr. Nguyen feels like it would be tight, but there would be enough room to perform surgery option A and enter robotically thru the base of the kidney where the ureter connects. He has prior experience and would be willing to perform the lengthy 4 hour surgery on both kidneys at one time. If we chose to stay in Peoria, our urologist is comfortable with doing just 1 kidney at a time, which would mean additional sedations. Boston would require 2 sedations - 1 for the surgery and 1 for the removal of both stints, which could be done after we returned to Peoria. Peoria would require 3 sedations (possibly 4) - 1 for the 1st surgery and if that went well, a 2nd sedation a few weeks later to remove the 1st stint and perform the 2nd surgery, then a 3rd sedation a few weeks after that to remove the 2nd stint.

I was thankful the door for surgical options had re-opened...but the decision we were faced with felt unbelievably difficult. Stay home where it's comfortable and familiar for 2 surgeries? Travel across the country and leave my son behind for 1 surgery? Is 1 surgery more risky in case something goes wrong and both kidneys are left damaged or possibly in failure? The list of questions was long. We gradually began working thru them and allowing ourselves to be led.

Our urologist in Peoria, Dr. Rhee, was very comfortable with us exploring options. In the end, he wants us to be comfortable with our decision and have no regrets.

Thursday we headed to the nephrologist. He reviewed Sara's labwork with me. Her kidneys are struggling but they are keeping up. His concern is the high levels of protein in her urine. Some of the sacs inside her kidneys are damaged or missing and the others are working harder to make up for it. That increased pressure is causing protein to spill over from the sacs and leak into her urine. The protein is another thing that can damage her kidneys. He started her on a low dose of blood pressure medication to reduce the pressure in the sacs and keep the protein from spilling over. We go back in 3 weeks for more blood work to make sure it is adjusting things accordingly and not causing other unwanted side effects.

Friday last week Shannon called Boston to speak with Dr. Nguyen and try to get answers to some of our questions. Unfortunately, both the doctor and his assistant were out of the office and they would return our call Monday or Tuesday. At least he was able to get Sara officially in their system so a conversation can be tracked.

Monday Shannon initiated another phone call. This time someone told him they didn't have enough of Sara's records. They wanted everything, not just imaging records. OSF came thru and faxed it immediately to Boston upon his phone request.

Tuesday morning (yesterday) at 8am Shannon got a phone call from Dr. Nguyen! He was willing to move forward with surgery, if we chose, without meeting with us for a consultation. He felt 1 surgery was the way to go and that is what they choose for children with other kidney issues. We would need to meet with the anesthesiologist the day before the surgery, then the day for surgery, 1-2 days in the hospital, and stay in the area about 3 days to make sure there were no complications before going home. The foley bag would be removed after 24 hours and the stints would come out in Peoria 1-2 weeks after the surgery. He wanted one more scan - a DMSA that would specifically show him how well the kidneys are functioning.

After talking to Dr. Nguyen on the phone, we both feel certain this is the best path for Sara. I am feeling thankful for that feeling of certainty.

We headed to the hospital today for the 10am injection of radioactive isotopes. My little rock star did awesome with the needle poke. I think the band tightened so much her arm was half the size was the worst part. They snapped a few initial photos and then we were on our way until needing to return at 2pm. It was so cute seeing Adam kiss the injection point on her arm to make her feel better!

We always seem to find something interesting during our hospital visits. This time was no exception!


We spent a few hours shopping for light fixtures - how exciting - and then had lunch at Avanti's. Then it was back to the hospital for more "pictures". And more fun distractions.






It was nice to see a familiar face when the doors opened - Nonnie did Adam's Mag3 Scan and she was going to finish Sara's DMSA scan. Sara got comfortable on the table and Nonnie told us she thought Sara would do such a good job laying still that she would be able to get a full 360 degree scan, which is highly unusual for 3 year olds.


As Sara lay on the table, the imaging camera rotated all the way around her for 10 minutes.


Below is a good snapshot of Sara's kidneys and how they are doing.


This is similar to Adam's Mag3 picture. The very light little dots are Sara's torso, arm, and her legs. The white is her kidneys. The isotope sticks to the functioning parts of her kidneys so where there are lighter or gray spots, that is where there is damage from her urinary tract infections. Because of her kidney reflux, the infection has flowed upstream into her kidneys. Normal kidneys would be perfectly shaped and completely filled in white. You can see there is a large part damaged in the top right corner of the right kidney. Nonnie also indicated the lighter spots in the center of both kidneys is also damage. We are anxious to hear the official report from the doctor.

Below is a comparative picture. Keep in mind that this is NOT Sara and the coloring is opposite, with black being good function. I just wanted to give you an idea of what a normal shape should look like. The kidney on the right is a normally functioning kidney. The left shows damage.

We will be sending the CD of the images to Dr. Nguyen for his review. At this point the only available surgery date in Boston is December 20.  Next would be January 11 or 17. We will talk thru those options with him to see what his sense of urgency is.

This is the first real picture we have seen of what is going on inside our baby girl. To us, she is a beautiful blonde-haired, blue-eyed little princess who loves to dance and be a mommy to anything close by that would qualify as her baby. She is very observant, like me, always watching what is going on around her. Her laugh is infectious. She loves to go high, go fast, spin around. And she is strong. Man, she is strong. It takes my breath away for a moment to see the picture of what isn't perfect inside.

We keep walking down the path, knowing that she is in good hands here on earth. And I rest in knowing that God already knows. Everything.

2 comments:

Jenny said...

Please keep us posted. I hope you are able to find peace in the midst of all of this chaos.

Heather said...

I'm so glad that you are finding options and feel comfortable with this doctor. Hoping all goes well!!