Tuesday, July 16, 2013

A journey with spina bifida

Months and months ago, I happened upon a stroller debate thread on a Disney message board.  Someone asked if their child who was past the "normal" age for a stroller would need a stroller during their trip to Disney.  It's funny how some people can be so opinionated over something that really has no affect on them at all.  One of the commenters, who was quite argumentative, said that his daughter, who was 5 or 6 (I can't recall exactly), gave up her stroller years earlier because it was for babies.  Just like she gave up diapers.  Because those are for babies too.  And he couldn't understand why any 5 or 6 year old would need to use a stroller.

I was infuriated.

I shut down and walked away.

As adults, we have a responsibility to think before we speak. I don't want to come off as smug or obnoxious but I sometimes feel like this blog has given me the opportunity to educate others.  Maybe someone will think twice before making certain statements because of something here.  This isn't to say that parents shouldn't say that diapers are for babies when potty training their kids but maybe an adult would think twice before expressing certain comments during a stroller discussion. Or maybe not because there will always be opinionated jerks out there.  And bullies.

As a refresher course, here's an overview of medical concerns/issues related to spina bifida:
  • Those with spina bifida have a higher chance of infections (urinary tract, bladder and kidney) due to being catheterized.  (Or "cathed" as we often refer to it.)  
  • To learn more about catheterization, you can read my post Everything you need to know about cathing.
  • Anna has a shunt that drains excess fluid from her brain into her abdominal cavity.  Shunt malfunctions and revisions are common concerns. 
  • Most individuals with spina bifida are on a bowel management program.  When you can't feel that you need to poop, how do you poop?

Tuesday, July 2nd was our second and last full day in NH.  Anna didn't eat breakfast that morning which didn't immediately concern us as she often doesn't like to eat first thing in the morning.  (Neither do I.)  She also looked exhausted.  Monday had to have been a tiring day for her.  We had forgotten to bring our stroller with us and decided that we would rent one if she needed it.  She did do a lot of walking but we were a slow moving group that took many breaks.  Rich and I also carried her here and there when needed.  The daily medication she takes for her bladder causes her to overheat easily and Monday had been very humid.  Luckily, cloud cover protected us from the sun for a good portion of the afternoon but it was still a fairly warm day.

Throughout the day on Tuesday, I asked her if anything hurt or if she didn't feel well and her response was always, "I feel fine.  I'm not sick!"  She was angry at me for asking.  She ate a decent portion of her dinner and seemed to have perked up.  We made sure the kids were in bed as early as possible that night.  She seemed to be a bit better Wednesday morning but then regressed during the ride back to Massachusetts.  We arrived home around 3:00, at which point I took her temperature.  101 degrees.  Crap.  I immediately gave her a dose of Tylenol.  After resting on the couch for a little bit, she played with her sisters and began to act more like herself.  Four hours later at bedtime, her fever still hadn't returned.  I ended up giving her another dose at midnight.

I checked Anna's temperature several times Thursday and Friday.  No fever.  I even checked Allie's temperature to ensure that the thermometer was functioning correctly.  She was eating and playing but also resting a lot.  By Friday evening, I was a bit concerned because I hadn't seen a continued improvement.  She wasn't getting worse but she wasn't getting better.  She really just wasn't herself.

We've had several experiences with random fevers and no known, diagnosable illness.  With Anna, there is always the concern of an urinary tract infection.  Because we catheterize her and see her urine, I didn't think she had an infection.  Yes, the urine had some sediment in it but I thought an infection would be outright obvious.  It's not.

Saturday morning, we took Rich's sister out to breakfast for her birthday.  Anna didn't eat much at all and that sick look was across her eyes.  I took her temperature when we arrived home.  102 degrees.  That was enough for me.  The pediatrician's office was only open for a short period of time on Saturday morning so after a few phone calls, it was decided that Rich would bring Anna to the ER.

They took urine and blood from her and even discussed with Rich taking pictures of her shunt if culture results were negative.  It's pretty bad when you hope that your kid just has a UTI.  She was diagnosed with a bladder infection.  They told Rich that it had not spread to her kidneys.  She was given a round of antibiotics and IV fluids because she seemed to be a bit dehydrated.  We were told that the culture results indicating what type of bacteria had caused the infection wouldn't be ready until Monday.

Ironic enough, she had a regularly scheduled semi-annual urology appointment that Monday, two days later.  The appointment starts with an ultrasound of her bladder and kidneys to ensure that they are growing properly and functioning correctly.  I became a little nervous when the technician left the room and returned with the resident.  That's usually not a good sign.  Up to that point, I hadn't told them that she had a bladder infection.  Turns out, they could see it in the urine in her bladder.  He asked if it had spread to her kidneys.  Rich said no.  He told us that there was a hot spot on her right kidney but it's always been there so he wanted to check it out.  He kind of made me nervous.

We then waited for almost two hours to see the urologist.  Two.  Hours.  He didn't seem to be concerned with the ultrasound results but he was concerned with the infection  We were concerned too.  He asked us how it had happened.  We didn't know.  The culture results weren't in yet.  We were waiting to hear from the pediatrician.  The conversation turned to how often we cath her and I really like her urologist but I felt like we were being treated like neglectful parents.  Sometimes it is impossible to cath her at 3 hours on the dot and in the past, "about every three hours" has been acceptable.  He asked if she was constipated, which can be caused by her daily bladder medication.  The answer to this is almost always no but on that one day, I didn't know.  As he was feeling around her stomach area, I started to try to explain my thoughts on the whole situation.  The lack of an effective bowel management program had in turn caused this infection.  I felt like he wasn't listening to me and the next thing I know, we are on our way to have Anna's mid-section x-rayed to see if she is constipated.

When a child is severely constipated, watery poop can seep around the blockage.  This has never happened to Anna.  I was trying to explain the difficulty in managing her bowel movements and this was interpreted to mean that she has this watery poop.  I sometimes feel like no one is really listening to me.  She often gets lumped into the category of "constipated kid" or "kid who holds poop."  Nope and nope.  She has SPINA BIFIDA.  Quite honestly, I wish she was simply holding her poop in.  BUT THAT CAN'T HAPPEN.  SHE HAS SPINA BIFIDA.

So off we go for an x-ray that revealed that she had a fair amount of poop in her but no blockage or  needing any type of intervention.

I spoke to Anna's pediatrician as we were returning to the urologist's office after the x-ray.  The culture results came back. E-freaking-coli.  I knew it.  I had nothing to do with how often we were cathing her.          It's the fact that she isn't on a proper bowel program.  She has a new GI doctor who has been willing to work with us but everything takes so long and we lost so much time last year with another doctor who had no other patients with spina bifida and kept insisting that she one of those kids holding in her poop. (Sigh.)  At the suggestion of her new GI, we recently tried a "program" that isn't necessarily geared toward kids with SB.  We went into it with an open mind but it just didn't work out.

It's been three years since Anna has had an infection.  When we first starting cathing her, we were giving her a daily dose of an antibiotic to stay ahead of infections.  Because she hadn't had any infections, she was taken off of it just after her third birthday.  She did have that one infection afterwards but none since.  Now, her urologist and her pediatrician agree that she should be placed back on Bactrim once she finishes the antibiotics for the bladder infection.  I don't want her on a daily antibiotic but I understand that keeping her kidneys healthy is priority,  Her urologist did tell us that he would decrease the dosage at some point and Anna has a follow up appointment with him in three months.

I feel like we just stepped back years from where we've been.

As we were waiting for Anna's x-ray, an older woman struck up a light conversation with us.  We were the only ones in the waiting area.  She was waiting for her husband and she noticed Anna in her little hospital gown.  She asked us her age and her name.  General conversation.  Nothing medical.  There's a little blonde girl who lives down the street from her also named Anna.  And then she said, "You have a very brave, little girl there."  I couldn't agree more.


Rachel Alexine said...

I work at a day care for medically fragile kids, one of the little girls has spina bifida. One moment really sticks out in my mind when I was helping her get her suit on to play in the water outside, she insisted that she didn't need a pull up because she was potty trained, and so and so didn't need a pull up and they were potty trained. She is 5 and has recently started expressing so many things specifically around her bowel and bladder issues. It is heartbreaking to see and hear but also makes my heart smile when she accomplishes something "little" that in reality is so big for her. From what I have read, you do a fabulous job with Anna and she is such a happy little girl who you take expert care of. Keep up the fabulous work with your brave little girl!

Amy said...

Sarah - sorry this is so frustrating. We're bringing Lilly to BCH tomorrow for uro and GI too. Things have been going fairly well. I'll send you an email with my contact info - feel free to be in touch if you want to toss around ideas or anything. This is definitely the most frustrating thing we deal with!

Cindy said...

I can't imagine how frustrating this has been for you. I know that finding a doctor who will listen to parents is really hard to do. Parents KNOW their kids - when will some doctors figure that out?

Pink Apple Rose Boutique said...

(((HUGS))) to you Sarah and Anna and family. You ARE brave, Anna, and strong.

Strollers - my daughter stopped using her jogger stroller around 7. We used it at Disneyland and we had passes so we went fairly often. She would tire easily and it was just easier to take the jogger for her. I let her decide when she was done. I still held on to it for over a year after she told me she wanted to walk at Disney "just in case". It stayed in the van until we sold it "just in case". It just worked for us.

JEN said...

My almost five year old has encopresis where she gets so constipated that the watery poop leaks around the hard poop. However, I am not brave enough to write about how difficult and awful it is.

Thanks for sharing.

Christi said...

Your Anna is a tough cookie. I hope she's feeling better and you get her doctors to listen to you.

Diane Burns said...

My 15 year-old daughter has L4-L5 SB and walks. She was also a kid who went off antibiotics at age 2 or 3, since she did not have any UTI's. She rarely has issues with constipation either. We have given her cranberry capsules for a very long time, and these may or may not help. She has rarely had a symptomatic UTI, but often has, you guessed it, e-coli in her bladder. I don't think this is unusual for kids with SB. She has self-cathed since she was 6, and now is very quick to complete the task, but not very "clean" with her routine. Recently, she was put back on a low dose of Macrodantin, since she was having accidents from a spastic bladder. This seems to have helped calm her bladder down. I hope that we don't do this forever, but I think it is a good choice until she gets better with her technique.

Just the Tip said...

@Diane, we recently stopped macrodantin (in Feb) and since then we have had accidents and A LOT of pee. She has to go every 15mins or so a full amount and therefore car rides have become impossible. You think that the macrodantin really helps her bladder in general, not just the UTI risk??

Sarah--I understand your frustrations with the conversation & uro & EVERYTHING!!

We went through 3 uro's before finding one we LOVE. Is it possible to find a new one or go to an SB clinic? The one we love is the uro for the SB clinic & she just "gets it."

I recently bought a kinderpack preschool carrier & people have given me such crap over why would I wear a toddler. They don't get that i'm being protective because they aren't the ones who are going to deal with her back hurting & legs flailing all night long after too much walking!

ThePinkHound said...

Before reading your blog, I would make snide remarks about people who used Handicap spots who didn't look like they had a handicap. Why do they need a close spot? They look normal.

Then I read about Anna, and your words have really opened my eyes. Just the other day, my husband pointed out a woman walking into the store from her Handicap spot, and remarked that she didn't look like anything was wrong. I turned to him and told him about Anna, and how you don't have to 'look' handicapped to need a sticker.

Three years ago, my Dad remarried, and my younger stepsister has CP. She refuses any help or special treatment because of her dx--in fact, I think she works harder in spite of it. I attribute that to her mother never, ever giving up on her (and being really stubborn). I see that in you and Anna as well, and she is so, so lucky to have you as her mom.

I see (read) you getting discouraged, and I can't help but feel like wrapping my arms around you, for support and to show you that your words, however small an audience you think you have or think your messages aren't getting through, your words truly have a ripple effect. I see big things for you. <3

(and totally apologize for making this comment a novel, sheesh!)

Sarah said...

Thank you! Thank you!

The Pink Hound - I like novels. Your comment is much appreciated. I needed to hear that.

We normally really like her urologist. I think he was having a stressful day and didn't have the time to focus on us. We had to wait almost 2 hours to see him, which is ridiculous overbooking.

Just the Tip - I've thought of getting a carrier like that for Anna for times when a stroller is just not that convenient. So frustrating that people are giving you a hard time over that.

Kim said...

Thank you for sharing your journey with Anna. I have a son who is 5. He has spina bifida and walks. We are just starting the bowel management programs. It is nice to hear other families going through similar situations.

Anonymous said...

Big sister of a little brother (now 19) with spina bifida. This post brings back a lot of memories. He has had countless infections from his cath. :/

Hoping the best for your family.