Why can't Anna be potty trained?
The nerves that affect your ability to control the muscles that allow you to urinate (or to not urinate) are located low your spine. Spina bifida (very basically) means that a portion of the spine failed to close properly during development in utereo. Usually, the spine beneath the area that failed to close properly, along with the afflicted area of the spine, suffers some type of nerve damage.
Anna has the most severe form of spina bifida. Almost all people with this type of spina bifida cannot urinate on their own. They cannot feel anything and cannot control those muscles.
What exactly is cathing?
Catheterization (what we have shortened to "cathing") is the process of emptying the bladder with a catheter. The process that we follow for Anna is called intermittent catheterization. I think that sometimes there is confusion because most of us think of catheterization or have experience of catheterization where the catheter is in place for an extended period of time.
How do you cath?
Here is what a cath kit looks like.
Each kit contains the following:
- Disposable puddle pad
- Iodine swabs
- Sterile disposable gloves
- A small piece of gauze
- Straight-tip catheter in a bag
I put the gloves on and swipe Anna with the iodine swabs, which cleans the area with the intent of preventing an infection.
I then push the tip of the catheter out without touching it. Rich and I manipulate it through the bag. Again, the goal is to touch as little as possible. Because the catheter is entering her uninary tract and bladder, I don't want any germs to hitch a ride in with it.
Depending on how full her bladder is, it takes anywhere from a minute to three minutes (or so, not more) for her bladder to empty. After that, you simply pull out the catheter, wipe the iodine off of her with a baby wipe and we are done.
How often does Anna need to be cathed?
We cath Anna when she first wakes up and then every two and a half to three hours during the day. She is cathed again right before bedtime. We do not have to cath her overnight.
Where do you cath Anna?
We have learned to adjust to cathing Anna while out and about. We always cath her right before we leave the house and/or as soon as we arrive at our destination. If we are going somewhere like the zoo, we will cath her as soon as we arrive so that we don't have to stop an hour into our visit to cath.
I don't like to cath Anna in public restrooms for several reasons. First of all, people stare and she is reaching the age where she needs some privacy. Secondly, most public restrooms have the pull down baby changing stations. Anna is still small enough to fit on those but there is nowhere to place the cath kit except for on the floor, which makes cathing difficult and potentially unsterile.
When we cath Anna in the van now, we put a blanket (or coats) over the console between the two front seats and lay her down on the driver's seat and console. The person cathing sits in the passenger seat and spreads the cath kit across the dashboard. (Am I the only one who keeps old receiving blankets in her van? They serve many purposes!)
I do want to comment about Disney here. It was very easy to cath Anna during our Disney vacation. Each park has a baby center with changing tables. We would visit those whenever possible. If the walk was too far, I would cath her in the regular restroom. Instead of those stupid pull down changing tables, they have big counter spaces dedicated to baby changing.
Will Anna always need to be cathed?
The simple answer to this is yes. Unless there is some new type of surgery in her lifetime, which is possible, she will always have to use a catheter to empty her bladder. At some point, she will be able to cath herself. When she goes to school for longer days, the school nurse will have to cath her until she is able to learn how to do it on her own
Has cathing Anna always been this easy?
No. The first time the nurse cathed Anna to demonstrate to us how to do it, Anna flipped out. It took her (and us) a few days to calm down. The whole process was stressful in the beginning. It seemed like during those first few weeks, Grammy or I happened to be the ones cathing Anna. Rich finally had to jump in and say, "Hey, I need to do this too."
We have all learned and now it has become part of our daily routine.
20 comments:
I am SO glad you made this! I was really confused by the whole cathing thing due to a friend's very different experience. Thank you. Not only does this make me more knowledgable and understanding, this makes me more tolerant.
I hope that a surgery does arise for Anna.
Thank you for sharing. I work with several children who are cathed at school, however due to the sensitivity/privacy of it, I did not know exactly the details of it. I appreciate your openness.
I do hope they come up with some kind of surgery or treatment for her. It looks simpler and a bit easier than I'd thought, but I can only imagine the struggling you must have been through during the toddler years. At least here, changing diapers (or just clothes, for that matter) can sometimes become a nightmare. Must be hard for her and for you if you have to fight over such a private and invasive procedure.
What is the mean age when a kid learns to do it by herself?
And since you are being so open and you have talked about the bowel issue, does she "leak" in between cathing sessions?
Thanks for this insight in to your life. You're a brilliant mum.
xo
Thank you for taking the time to post this. I did not know cathing could be done intermittently. I assume this is more beneficial for her, because she doesn't have to keep a bag and rubber taped to her leg. I have an irrational fear of being cathed, so much that it was almost the sole reason I refused an epidural with Peyton. I was almost in tears when they had to cath me with Morgan. They even waited until I was numb. Peyton has been cathed about 4 or 5 times. She ALWAYS screams bloody murder and it takes 3 people atleast to hold her down. How old was Anna when she was able to understand and have it not hurt? I feel awful for P when they do it & twice they've had to do it more than once because they 'missed' ?
They are doing such great things with surgeries regarding spines and nerves, It would be great if Anna could have a surgery.
I know in other countries they are more advanced, is there anything available anywhere in the world that would help her?
Also, if you don't mind me asking, does Anna have any tone/walking issues. She looks so perfect, like Peyton, her CP affects her differently than a lot of kids and the general public doesn't pick up on anything being wrong with her. I guess I have an image of spina bifida in my head & Anna doesn't fit it.
You're an awesome mom. =)
I didn't know if you have heard of a procedure called an appendicovesecostomy. A uriologist can sometimes connect the appendix to bladder and then children with spina bifida are able to cath themselves through their belly button. I took care of several children that had this procedure and they loved being able to cath themselves this way.
I was wondering how things would go at school. Thank you writing for this informative post and glimpse into your life.
You sure have a little sweetie.
Wow, we have cathed our daughter w/sb for almost 7 years. I have never seen a kit like this. We have always used a straight catheter. We would cath into a container of our choosing. We also use a personal lubricant on the end of the catheter. We use a regular baby wipe to clean not betadine. Our daughter would only get maybe one uti a year if even that. She had the mitrofanoff and mace done December 2010. Since then she is getting more infections. But still the same process of using straight catheter, baby wipe and personal lubricant. She now catheterizes through her belly button. It is the best surgery we have ever done. It has given her independence and a lot easier to cath in public bathrooms, car, and actually anywhere.
Thanks for sharing!!! The whole time I was reading this I was mentally asking, does it hurt her to be cathed? Or does she not feel it?
What about number 2? She can do that on her own then?
What about number 2? She can do that on her own then?
As she gets older will you cath less frequently? I'm a nurse and our patients go 4-6 hours between cath's and a lot of our home patients use a straight catheter over a toilet (no bag) and also at home it's a "clean" procedure and not sterile.
Also, I don't know if anyone told you this, but as long as you manipulate the catheter through the bag, the outside of the bag doesn't need to be sterile nor are sterile gloves needed. Theoretically, only the portion of the catheter that is inserted needs to remain sterile. This of course is your preference (we use the cath bags in the hospital and it eliminates the need for costly sterile gloves), just thought I would throw out an FYI.
Also, as for surgery, there is such a surgery where a fistula is created above the pubic bone and a catheter is inserted into that for cathing (directly into the bladder, bypassing the urethra). I've worked with children who have SB and have this, it's called a subra-pubic catheter if you haven't heard of it and want to research it a bit more. Some of our younger kids have an attachment to the fistula at night so urine can drain into a bag. HTH.
I had no idea. Thank you for posting this and letting us in to your life
Thanks, everyone. You have asked a lot of good questions. I promise to answer them in another post.
I should have clarified the surgery comment. There are procedures which some of you have mentioned. What I really meant was that she will never be able to pee like we do.
Andrea - thanks for a nurse's point of view. The gloves come with the kits - we wear them in case we need to grab the catheter (which happens sometimes). And I know that Grammy sometimes has trouble moving the cath like we do and pulls it out with the gloves on.
Thanks for sharing, my nephew was born with the worst type of Spina Bifida in Oct. My sister and brother in-law had to cathe him until January and he is being observed regularly and may have to be cathed daily again.
This is great! I wonder if I shouldn't do the same thing on my blog - except for feeding tubes and stuff. It always helps that people know! Btw, cathing is not one of the many medical things we have to do - at least not yet!
Wow! I was confused by it all but wanted to know more, so thank you very much for sharing. I think you explained it well! :) Thanks!
Anna is so much braver then I was- after giving birth, I wasn't able to pee at all for just over two weeks. The nurses decided that I'd be better off if they sent me home and taught me to cath intermittently- when the nurse told me this, she looked at my face and said "80 year old women can do this, so you can too!"
My main issue with DIY was that I totally did not want to look down there at what had happened to me post labour.
The feeling of the cath going in creeped me out.
I always cathed into an icecream container. Empty, of course.
great post! Arwen is on the track to needing to be cathed like Anna. We will find out at next clinic if her uti problems are sb related or tethered cord related. we've had to cath many times for uti tests but i still am not sure how on my own so i appreciate this post. does your kits come with latex gloves or are there non-latex kits?
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