It never gets easier

Lil Bug has many medical consequences to having Spina Bifida. A few I have mentioned in previous posts, and many I have not even touched here yet.

Most of the time I am ok. I am happy. I am grateful. I realize things can always be worse. But once in a while I am not ok. I am sad. I am emotionally drained. I am frustrated. And, I feel like the weight of the world (or at least my daughter) is on my shoulders.

I am best described for the last half of the previous paragraph right now.

Lil Bug has been plagued with UTI's since her birth. The first 3 or 4 infections she was hospitalized for because she had a bug so bad that only IV antibiotics could eliminate it. As she has aged, the infections that she gets have been more common and oral antibiotics are successful. When I say plagued, I mean PLAGUED. She gets them just about every other month and sometimes even sooner. It isn't because she isn't clean. I do a great job keeping her clean and if I thought changing her diaper every 30 minutes would fix the problem, you can bet that I would do it. But, that is not the problem. The problem is her bladder and bowel control issues. Actually, I should say lack of control issues.

Her spine opening was in the L5-S2 range. That is low on the back. As a result she has no feeling in her feet and less sensation in parts of her legs. Most children (adults) with Spina Bifida have bladder/bowel issues because the nerves at the lowest part of the spine are the ones that actually control those functions. Even if you had an opening at the very stem of your spinal cord, there is a good chance you would have some amount of bladder/bowel issues. It sucks!

The problem with her bladder is that the sphincter at the bottom/end is generally "stuck" in the closed position, so she doesn't urinate on her own. Sometimes she leaks, but she doesn't go pee like you and I. As a result, the urine sits in her bladder and bacteria grows and she gets a UTI. Even if she could voluntarily open the sphincter, she may still get UTI's because she doesn't have the muscle control to be able to squeeze the pee out and so some amount of urine is always in her bladder because she can't empty it on her own. Urine is DIRTY. It should not stay in the bladder. So, our solution? We have to catheterize her 4x a day and limit her liquid intake.

Think about that! Can you imagine being catheterized even once, let alone daily and 4 times daily at that! It is a sad truth for Lil Bugs life. She doesn't complain about it usually. Since her sensation is lowered in that area, it doesn't hurt her. Her biggest complaint is that it takes time to do it and she has to stop playing to have it done.

Even though we do this process daily, she still gets UTI's and it is so frustrating. For one, it is a huge reminder (however small) that Lil Bug isn't the typical 3 year old...she has other issues that need to be addressed. For another, she is in pain. She complains that her belly and "bottom" hurt. She doesn't understand why she has to suffer. She doesn't like the medicine that she must take to make her healthy again. It is frustrating to know that these UTI's could turn into kidney infections and that would open up a whole new battle that fortunately we haven't had to deal with.

This past Friday she started complaining that her "bottom" hurt. I also noticed that her urine was smelling strong. As I catheterized her, I noticed sediment in her urine. I have the necessities to flush her bladder out, which I do when I think a UTI might be coming on. I flushed her Friday, Saturday and Sunday. If flushing is going to work, it usually works within the first day or two. By Sunday night she was in so much pain and complaining that I took her to the Urgent Care Center at about 7:30. We returned home around 10:30pm after picking up her new prescription. She took it, went to bed and slept well. Yesterday she woke up and we got her all ready for school. We were literally walking out the door to go to school and she started complaining it hurt. I decided she wouldn't go to school and she was devastated. This is the first UTI that she has complained about hurting. She is always whiny. She is always clingy. She is always tired. But, she never tells us it hurts. This time she did.

I don't want Spina Bifida (and its side effects) to control Lil Bugs life. I don't want her normal day-to-day activity to take a backseat to this craziness. I am slowly learning that no matter how "normal" she appears, she isn't. That is a hard fact for a mom to swallow. Yes, she will still have a great life. Yes, she will be able to do most things just as anyone else her age can do. Yes, that is true, but she will not have the "normal" life. Normal doesn't consist of chronic UTI's. Normal doesn't consist of walking with crutches. Normal doesn't consist of frequent brain scans. Normal isn't the first word I would use to describe Lil Bug. I know that many families face many difficult things in life, and I am not saying ours "things" are easier or harder than theirs. I am just saying that right now, this is hard for me.

Sorry for the downer post. I am just feeling down right now. I think I will be writing more posts surround some of this again soon. There is so much on my mind right now and this is the safest place to let it out.