Friday, October 9, 2015

Some disappointing news

October is Spina Bifida Awareness Month.  It is also Pregnancy and Infant Loss Awareness Month, Breast Cancer Awareness Month, ADHD Awareness Month, National Cyber Security Awareness Month and Vegetarian Awareness Month.  Just to name a few.  October happens to be the awareness month for more than twenty different things.  Unfortunately, with so much Awareness Month of This and Awareness Month for That going on, I think people tend to ignore what's being said.  Yeah, yeah, yeah.  I already know about that.

If you read here frequently, you're already somewhat aware of what spina bifida is and how it impacts us.  For the most part, spina bifida doesn't affect our day to day.  Yes, we have to make sure Anna takes her medicine three times a day.  Yes, we have to make sure Anna is cathed every three hours.  These are simply routines that aren't a big deal.  But, unfortunately, sometimes spina bifida does rear its ugly head and throw everything off balance, just like it did this very week.  And so it happens that I'm discussing the not so nice side of spina bifida during Spina Bifida Awareness Month.

Years ago, Anna was diagnosed with reflux from her bladder to her right kidney.  Reflux of this nature can cause urine to back up into her kidney and because she's at a higher risk for urinary tract/bladder infections because she is catheterized, there's the fear that an infection could spread to her kidney.  Anyone can be born with kidney reflux. When Emily and Allie were babies, they were both diagnosed with oddly shaped openings between the bladder and right kidney.  (In case you needed further proof of their identicalness.)  Anna, unfortunately, was the only one who ended up with reflux.

Anna's urologist wants to correct the reflux.  His mission statement, so to speak, is we must preserve the kidneys.  So here's where spina bifida sort of gets in the way.  Anna has a neurogenic bladder, which is an element of SB.  Basically, her bladder doesn't function or act like my bladder does.  The most common way to surgically correct reflux is with a deflux injection, but the success rate of this treatment is much lower for those with neurogenic bladders.  However, Anna's urologist was optimistic and thought she was a good candidate for this procedure based upon certain tests.

Anna underwent the deflux injection surgery in July, which I blogged about in detail here.  This week, we returned to the hospital for testing to see if the surgery was successful.  In general, I tend to stay cautious with my optimism but I really thought this was going to work.  I thought we were going to sit in the exam room and have him show us on screen that the reflux was gone.  That didn't happen.

The reflux was still there.  Although, he did point out that it was a bit smaller when compared to the pre-surgery scan.  This was not the news I wanted to hear and I was extremely disappointed.

So now we are back to two options:
  1. Try the deflux injection again.  We were told at the beginning that it may take two injections to work.
  2. Undergo major surgery.  Ureteral reimplantation to be exact.
Understandably, we are trying to avoid the second option which would require a hospital stay and many, many recovery days.  So we are back to deflux injection surgery again.  And the real shitty part is that there's a chance it may not work.  She may need to have major surgery after undergoing these two minor surgical procedures.

Anna was upset when she figured out what was going on.  We had just come from the scan where her bladder was uncomfortably filled with fluid to see if any refluxed to her kidney.  For some reason, the doctor didn't like the first scan and they had to do it again so all she was thinking about was discomfort.  We downplayed it and said she could be asleep for the next time. We try not to say "surgery" when discussing it.

It has already been scheduled for the third week of this month.

In keeping with the whole Spina Bifida Awareness Month theme, there are few statements I'd like to make before I hit publish.

Spina bifida cannot be prevented.  Folic acid reduces the occurrence of spina bifida but nothing can completely prevent it from happening.  I tend to side with the believers of genetic factors and just nature itself.  I was told that with identical triplets and all the egg splitting, things like this happen.

No two people with spina bifida are the same.  There may be common themes such as cathing and hydrocephalus but spina bifida affects each person in a different manner.

If someone with spina bifida needs to be catheterized or relies on a bowel management program, it cannot be changed by potty training them.  Their nerves were damaged and unless there's some new breakthrough surgery, they will always be this way.  It doesn't matter how you parent them.  This is how they are.  Accept it and move on.  Don't ask if they can be potty trained later.       


erniebufflo said...

Ugh, I am so sorry you guys are dealing with this. I hope the second procedure works and you can avoid the major surgery!

maureen said...

I'm sorry the news wasn't what you wanted. You and your family are so brave in all that you face with Anna's health. I admire how strong you are and how confident your daughters all are!

Thank you for sharing about Spina Bifida. I am sure it isn't always easy, but you keep it real and your words are so appreciated!

Teej said...

I am sorry for the bad news. You have raised a strong daughter, and I know she will get through this too, but I really wish she could have caught a break.

Anna said...

Hello! I've been reading your blog for years, and I always read about Anna's struggles with interest and sympathy but no real connection. But then I had my daughter (she will be two years old later this month), who has a host of her own medical challenges, and I was extra interested to realize that Anna is dealing with reflux, too.

For what it's worth, my daughter had ureteral reimplantation back in May, and the recovery was very easy. I had read so many horror stories about the surgery beforehand and was expecting the worst, but it really wasn't too bad. She was only 18mos at the time, and I do think the littler kids bounce back quicker, but still. The surgeon had us use Oxytrol patches to manage the bladder spasms (vs oral meds, which seems to be what everybody else is prescribed), and I never got the impression that she had a single spasm. We spent two nights in the hospital, and I think I can pretty safely say that the head cold she'd caught right before surgery was worse for her than the recovery. And she had the open surgery -- once they got a scope inside, they realized her right ureter bypassed the bladder entirely! The doctor has been thrilled with the results and said she only needs annual ultrasounds now instead of VCUGs!

I know her case and Anna's aren't the same, but I just wanted to offer a positive story about the surgery, in case you wind up going that route.

Sarah said...

Anna - thank you for sharing. That is good to hear! I get freaked out whenever her urologist brings it up because he adds that the recovery is tough.

Siné said...

Such tough news. I will be praying for your sweet Anna that the procedure works so she can avoid extra surgery.