A Pouch of Spare Parts?

Oh the things you think of when you are a parent. Yesterday I was so upset because I only have two kidneys. Silly huh? Sometimes I think maybe God should have given us pouches with spare parts. It has been in the back of my mind for the past four years that there could come a time when my son might need one of my kidneys due to diabetes. Now don't get me wrong, I don't think about this all the time but it is one of the checklist items. Not a problem, I would give my kids any part of me that will work for them. But what happens when more than one of your children need something you only have one of to offer?

Sarah was born with VUR (vesicoureteral reflux ), which is where the tubes that connect your bladder and kidneys are too short. This causes a backsplash of urine from the bladder to the kidneys and causes infections. Kidney infections are bad because they can scar the organ and cause big problems. The thing about all of this in girls is that if there is damage to the kidneys, the option of having a child could become life threatening.

My girl was lucky enough to be diagnosed while still in Utero. On the day she was born the doctor started her on Penicillin, to keep the infections at bay, and she continued on it until her first birthday. Then she was taken off of the antibiotic until she started having infections. Her first three years she was on the meds more than off of them. Her VUR graded high enough to warrant surgery to correct it. She had her first surgery to correct the worst side, this of course put more pressure on the other side which quickly blew out. She had a second surgery to repair the second side and reinforce the first side. After her follow up we were told that she did great and all was well, but that they would want to see her back again when she hit puberty.

We learned a ton through this experience about how bubble baths are bad for girls, how complete voiding is very important and holding it when you have to go is definitely a bad thing to do. We learned that when girls are little and don't fit well on the potty they hold their legs together so as to not fall in and that keeps them from fully voiding. The answer to this problem is to have them sit on the potty backwards, who knew? We learned, we followed the instructions of always allowing her immediate access to the bathroom, we did everything possible to keep infection in the past. We were determined to protect those precious kidneys.

Her whole life she has had to pee more than any child ever. I can't even tell you how many times my heart has stopped with the thought that she had Type 1. (She doesn't, I have tested her many times) Every year it is an issue with the school about how many times she must go to the restroom. Every year I take her back to the doctor to get a note saying she should have unlimited access. This year she is also battling more infections. We are currently waiting on a culture result. She just finished an infection but again her urine is full of blood and she has back pain. The doctor started her on a medicine for OAB (Over Active Bladder), hoping to relax her bladder enough to lessen her bathroom breaks and bedwetting.

My girl is almost eight years old. When she was born we knew that she had an issue and that we would do whatever it took to correct it. We just never realized it was going to be chronic and never go away. When she had the surgeries I was so relieved that her kidneys would then be protected from further infection and damage. I never realized that it might not do the trick.

Sarah wants to be many things when she grows up. Often the list changes or expands but one of the constants on her future list is being a mom. I can totally see her as a mom, she would be awesome at that job. It breaks my heart to think that dream could be threatened, it makes me angry that no matter what we have done the problem still hangs on, it scares me to think about her health and to face her risk percentage on the AI range. Miss Sarah is strong, smart, funny, beautiful and caring. She is a firecracker and I know she is going to be fine.

As a parent, it still hangs in the back of my thoughts though. I have two kidneys, just two. I guess I need one, but who would get the other? That is a decision I hope we never have to face but it sure makes you appreciate the gift of healthy organs, the gift of the opportunity to keep our kids healthy, and the gift of foresight. Maybe that is why we don't have a pouch of spare parts, we would not appreciate the blessings we already have.