A New Type of Hurt.

Why is it so much worse when your children hurt? Maybe because you want to bubble wrap them so that pain isn't an option in their lives. Clearly - that's not a solution. But I'm learning that all of the hurt I've felt in my life doesn't even compare to seeing your child struggle. Lucky for little CC - she is in really good hands with the physicians up at Primary Children's Medical Center.

We met with surgeons and pediatric urologists earlier this week. Little Sienna's condition is not going to get better, without the help of surgery. With Grade 5 Kidney Reflux on her left side, surgeons say there is an 85% chance this surgery will be successful and stop the reflux. Sienna is scheduled for surgery at PCMC on June 7th. She remains on antibiotics, and she will continue to take them 6 weeks post surgery too. The antibiotics are preventing her from developing another kidney infection - but her urinary tract is full of bacteria due to her kidney (or vesicoureteral) reflux.  Her bladder is not draining properly.  This is why she has been so sick.

Sienna's system looks similar to this picture. Her left side is distorted and dilated. After taking a closer look at her ultrasound pictures - surgeons think she has a partially duplicated system on the left side. That means she has two ureters connected to her left kidney, and then it appears they channel into one tube - attached to her bladder. So it looks like a "Y" shape. Those ureters are twisted and enlarged because fluids, which should be exiting her body...are being held in the bladder and then going back up - making it all the way to her left kidney. The doctors will be able to tell, during her surgery, if she has suffered any kidney damage. The non-working culprit that's been making her feel miserable is a flap-valve that is located inside of the bladder and attached to the ureters. It's not strong enough - so it's been allowing urine to relux back up into the kidneys. Sienna has Grade 2 reflux on her RIGHT side. Usually, with Grade 2, Doctors would put her on antibiotic therapy until her system could mature. (Usually around the age of 6.) But since they will be fixing the greater problems on her LEFT side - they will do the surgery on the RIGHT ureter as well. Surgeons will make an incision in her lower abdomen, much like a C-section. They will cut into her bladder and correct the flap-valve attachment. She will be at Primary's for 3 to 5 days, and then come home with ureteral stent tubes. Since her little system will be swollen, the tubes will come right from her bladder out of her tummy, above her hip bones. We can attach bags to her legs to collect the urine or double diaper her. She will have the stent tubes for a week or so.  

The more people I speak to, the more I learn there are many children suffering from some form of Kidney Reflux.  Doctors say it occurs in about 1% of healthy children.  It's something I had never heard of 2 months ago.  But research shows 1/3 of siblings have Kidney Reflux...so we will definitely screen for this in any future Taitor-Tots.  

Enjoying some milk!  Yummy.  

Sienna really loves to play Duck*Duck*Goose.  She randomly walks around tapping her head or a stuffed animal's head to keep the game going!

Thanks to all who have expressed kindness for Sienna.  This surgery has the potential to make her feel whole.  No more yuckiness and bacteria harbored in her system.  She's going to be okay.  I've been crying. A little.  Okay, more than a little.  I realize there are so many others dealing with things much, much worse...but my heart still breaks for my baby. It's overwhelming.  And yet, it's amazing that surgeons are skilled enough to identify and fix this problem.