A lot of you know that Makinley was diagnosed last year with a kidney/bladder reflux issue. Here is the definition/explanation to help.
Urine is produced in the kidneys and flows through the ureter, the tube that carries urine from each kidney to the bladder. A valve mechanism prevents urine from backing up into the kidneys as the bladder gets full. Urine leaves the bladder through the urethra and is eliminated from the body during urination.
In some children, an abnormality in the valve or the ureters allows urine to flow backwards, a condition called vesicoureteral (VUR) reflux. In mild cases urine backs up into the lower ureter. In severe cases it can back up into a swollen kidney. Usually, children with this condition are born with it.
Reflux is graded according to its severity:
Grade I results in urine reflux into the ureter only.
Grade II results in urine reflux into the ureter and the renal pelvis, without distention (hydronephrosis).
Grade III results in urine reflux into the ureter and the renal pelvis, causing mild hydronephrosis.
Grade IV results in moderate hydronephrosis.
Grade V results in severe hydronephrosis and twisting of the ureter.
Makinley was diagnosed with a Grade III on the right and Grade IV on the left. She was over 3 when diagnosed so we were extremely lucky that she didn't have kidney damage. She was put on a preventative medication to help protect her kidneys. We did that for a year hoping that she would outgrow it. She had to go back June 3, 2008 for her second VCUG. That is where she has to be medicated, a catheter used, and a dye injected that fills up her bladder and in her case also shows how far it flows back up into her kidneys. I was hoping for good news at that appointment. She ended up the right side improving to a Grade II but the left side became a very high Grade IV and her kidney had actually started to shrink up. Very bad news. Dr. Joyner is her urologist. He wanted to try a non-invasive procedure first. It was called Deflux. On June 12th she was put under anesthetic and he used an instrument through a catheter to inject a polymer type material around the bottom of both sides of each ureter that was attached to the bladder. His hopes were that it would prevent urine from going up the ureter into the kidneys. About a month after that we were back just to have an ultrasound. It showed that the implants were still there but we didn't get any other information at that time.
Today was the big day. We were up at 5 a.m. for the drive to Seattle. We got to the hospital with about 15 minutes to spare. We got checked in and called back to our room to wait for the nurses to medicate Makinley. She measures in at 38 pounds and 3 feet 8 inches tall :) The nurse came in and gave me the medicine in a syringe to give to Makinley. She took it with no complaints. I then had to hurry and get her changed into her hospital gown. The loopy medicine works fast on her. After she was silly and limp a nurse helped me transfer her to a wheelchair and then we got her down to the x-ray room for the VCUG. Even with the help of the sedation each VCUG gets harder. The catheter really burns and hurts her so you can imagine it's not a pleasant experience for anyone in the room. She also had a hard time when her bladder was filled with the dye. She was just overly uncomfortable this time. I'm really proud of her though. After that was done we went back to our room for her to recover some. Our appointment with Dr. Joyner wasn't until 2:15 p.m. so we had awhile to wait. Makinley had to be in the wheelchair for about 2 hours anyway. She was really tired and off balance. We went to wait for the appointment and ended up not getting in a room until an hour after our scheduled time. It was after 4:00 p.m. by the time we saw the Dr. and got outside.
The results from today were not good. Even now I can't seem to get my mind around it. The right side that was a Grade II seemed to have improved. The left side being optimistic is a high Grade III. Urine is still going back up the ureter and filling up that kidney at least halfway. Urine in the ureter at all is bad. So now even after all this time and the Deflux procedure it isn't fixed. Our only option now is surgery. To put it in easy terms they call it a Ureter Reimplant Surgery. Dr. Joyner will either do it from the outside of the bladder or from the inside depending on what he finds when he gets in there. Makinley will have a 6-8 inch incision just above her pelvic bone. He will go in and with either option will basically take the ureter and surgically reimplant it to the inside of the bladder wall. This should stop the urine from traveling back to her kidneys. He is doing the left side for sure and will do the right at the same time if needed. The surgery will take around 3 hours. After the surgery she will go to recovery and then be taken to a room where she will have to stay for 3-5 days. Some of the things she might deal with after surgery our bladder spasms, cramping, incontinence, pain, and a whole other list of scary things I won't share with you now. The list of complications are overwhelming too.
Makinley will have a month where she can't climb, ride bikes, ride scooters, etc. 6-8 weeks after the surgery she will have an ultrasound. This will only check for blockage or something wrong. We won't know if the surgery was successful until she has her 4th VCUG which will take place 4-6 months after surgery. During all this time Makinley will remain on her antibiotics. If her VCUG shows the reflux is gone then we will be done with it at that point.
I have to wait until Thursday to get a surgery date for her. Once we get that we can plan out the rest of the schedule more. I am completely overwhelmed thinking about it all right now. I'm scared that my baby has to have surgery and go through this. I'm freaked out because our medical doesn't cover much. I'm just exhausted.
On a good note Makinley starts preschool tomorrow. She is very excited about that. We have to do that, I have to work out, get a training run in, paint Jason's Grandma's garage, help at Makenna's school for school pictures, have a small soccer practice and then coach the game. I really can't imagine why I've been tired lately.....
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