Sunday, June 23, 2013

No medical change

Sara had a trip to OSF Friday for an ultrasound, x-ray, and VCUG. I am so thankful that appointments like this are easy. After all she has been thru, most kids would be nervous or scared or downright unwilling to go. But the day before, Sara told my mom "Grandma, they are going to give me medicine that makes me loopy tomorrow!" and then she giggled and ran off to play.

What a difference these past months have made with how I handle the ultrasounds. I remember the first time I saw white things on the screen that the tech would stop and take extra pictures of and measure. I knew in my gut something wasn't right when they would do that. I could feel my heart beat faster just watching the screen. But Friday it didn't bother me at all to see the pauses for extra photos of the stones that still remain. It's just part of our reality now, our unexplained reality that just is.

Pediatric sedation has a new area on the ground floor by the surgery area. Walking thru there is like seeing old friends as we exchange a smile and a wave. 7 surgical procedures in 3 months will create relationships like that. The staff is always so nice. They got Sara set up on an iPad with some games. The doctor game was fun, putting sick animals in a hospital bed and doing procedures to make them feel better--eye drops for a kitty, shining a flashlight in a sick monkey's ear, removing things a puppy had swallowed with a magnet. The nail salon game was a little disturbing seeing a giant toe on the screen as Sara picked different designs to decorate it with.

It took a while for her loopy medicine in preparation for her VCUG to kick in so they gave her just a little more. Things went very smooth. She had just a little discomfort as the catheter went in but apparently it was minimal compared to what they normally experience. They injected fluid to fill her bladder while she laid on an x-ray table. Photos were taken to document whether her urine flows backwards from her bladder to her kidney, indicating reflux. This is the same test that was done last August and the urologist wanted a follow up to see if her body had corrected itself any over the past 10 months.

Sara really wanted pancakes for lunch but we ran out of time and had to eat at the hospital sandwich shop. Sometimes it can be so funny what Versed does to her. We walked into the shop and she screamed in excitement "Daddy!!! A banana!" as she saw it in the display window. Shannon bought a banana, a muffin, a BLT for himself, and a couple hot dogs. He set the tray on the table and she expressed her anger "I don't want a banana!" We just smiled at each other as she also complained that she wanted a donut. I asked if she wanted some muffin and she about bit my finger off taking a bite. A few minutes later I calmly asked if she would like some banana. Apparently enough time had passed and she was interested now. The mood swings between coming off of being loopy, being hungry, and ready for a nap creates quite the perfect storm for an emotional break down.

We headed to the urologist to discuss the results of our morning of tests. In a nutshell, no change.

The kidney stones are the same. 2 large ones remain on the left and there are still some on the right, as well.

The ultrasound showed both her kidneys are still dilated. He isn't as concerned about the dilation as he is about her kidneys becoming thinner.

And her reflux has not improved at all. At this point it is unlikely that her body will correct itself. Up until now, every time the urologist talked about her reflux, he talked confidently that he thought it would improve. This was the first time he said he thought it wouldn't be possible.

He still wants to give her more time, as long as her kidneys continue to keep up and remain stable. Time for her scar tissue to heal from robotic surgery in Boston. And time for her to grow. The access point is just so small for Sara that he needs it to be larger to do another surgery. Maybe in a year he will do robotic surgery just on the left and remove the stones that remain first and then correct the reflux that exists on the same side. We did not discuss any plan to remove the rest of the stones on the right. Another ultrasound in 6 months.

We are focusing on the positive of the news. We are thankful that no more stones have formed. We are thankful that her kidneys remain stable. We are thankful for Sara's strength in handling these medical issues.

Honestly, I wasn't surprised and had expected the news. I'm not happy about it. And it would have been nice if she didn't have to take antibiotics every day anymore. I'm not happy that she will have to do another surgery but that also probably won't be the last one. It's just our reality that we have to accept. Our reality that God is still in the middle of.

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