Day 20: Surreal
There are misconceptions about spina bifida, like that mobility is the only obstacle SB kids will face. Our number one worry before learning the reality about spina bifida was whether or not our daughter was going to walk.
How many kids did I know in school that were in wheel chairs? Or crutches? Not many, so it was hard for me to truly understand, to really be able to imagine the reality of a child who needs help getting around. And when you don’t understand something, it can be scary.
I’m just being honest. It was scary, especially the day we learned of her diagnosis, thinking about the potential struggles she would face if she could not walk. How could she mainstream in school? As far as I knew, they didn’t practice immersion with special needs children in schools. A lot of these thoughts, obviously, were result of a poor understanding and AWARENESS of any type of special need.
This is no insult to anyone. A lot of us just don’t know, we can’t relate. It’s hard for us to empathize with families and individuals who are faced with birth defects, cognitive delays, etc. That is one of the reasons I am writing these posts.
So what other obstacles are there, Priscila? Enlighten us! Well, okay. I’ve said it a thousand times, and I’ll emphasize it again – SB is different for every kid. There may be a child whose biggest battle is mobility, but more often than not, there are other issues thrown into the mix. There are two big ones that come to mind:
We’ve already touched on hydrocephalus (hydro) a bit and you know that Eliora has had multiple surgeries because of it. To be a bit blunt – hydro can suck sometimes. You may only need shunt placement surgery, or you may need that plus a dozen shunt revision surgeries as well. Any given child can have a long battle with hydro, with their shunt, and be in and out of the hospital sporadically over the span of years.
Eliora has not had any other issues with her shunt since that last surgery, thank God.
Bladder problems take things to a whole different level. There’s no real maintenance needed with shunts. You just basically keep an eye out for signs of a malfunction and you’re good to go. Bladder issues, on the other hand, can make an impact on your daily routine. An impact that everyone will adapt to and that will most certainly become your normal, but it’s still a change nonetheless.
Even at the lowest lesion level, the bladder and bowel muscles can be affected. The muscles may be too loose, resulting in leaking from both ends. Muscles may be frozen tight, so children need help peeing and pooping throughout the day. They may be totally fine, but have no feeling down there… it’s suprising the many different combinations of complications one child can have.
In Eliora’s case, she needed to be catheterized about 4 to 6 times a day because she wasn’t voiding all of her urine out on her own. However, everyone, even the urology docs, thought that she had some muscle control and could at least push most of it out. As far as pooping goes, she just leaked all day long.
This was all determined based on renal ultra sounds to the abdomen and a few MRI scans that were performed during her NICU stay.
A concern that follows catheterizing is urinary tract infections (UTI). Think about it – a foreign object is being inserted multiple times a day into the body. I’m sure you can see why keeping everything sterile is of utmost importance. Washing hands, making sure the tip of catheter touches NOTHING, making sure the lube is sterile, and that Eliora is clean prior to being cathed. All of those things are essential in keeping her clear of UTIs.
I’m confident that many of you can attest to the fun involved in having a UTI… fevers, pain, blood in the urine. Fortunately, Eliora only experienced a couple. We were able to catch them early based on the color and consistency of her urine whenever we cathed her.
At some point early in the summer, Eliora had a urodynamics study done. This involved x-rays and tubes that actually measured the level of pressure in which her urine was released from her bladder. It was during this test that we learned that she actually could not void her urine AT ALL…
She was having wet diapers because her bladder was getting so full, it was leaking from the build-up of pressure. The worst part of this was that her urine was refluxing back into her kidneys, which could lead to serious infections. I was extremely thankful that Eliora had not developed any serious infections due to this.
Up to this point, a lot of the “extra stuff” that comes with SB just seemed a bit surreal. It’s like we hadn’t mentally processed that certain things, like cathing, weren’t just temporary – it’s something she will have to do everyday for the rest of her life. Sure, when people asked and we talked about it, we would tell them that fact, but it wasn’t something we had fully acknowledged.
A few weeks after the urodynamics study, we met with her urologist. Dr. Smith is wonderful, but he certainly values his time. Maybe a little too much. He’s very thorough, asking questions, jotting down notes while adjusting his glasses every few seconds. He quickly covers the results of the study, informs us that Eliora is refluxing into her kidneys, needs to be put on daily doses of prophylactic medications, and needs to be cathed more frequently, about 8 times a day. Any questions?
Well, yes. What on Earth is prophylactic medication?! It’s just a fancy word for medicine that is used as a preventative rather than a treatment. Eliora was put on an antibiotic to help prevent infections and a drug that technically numbs the nerves in her bladder allowing it to expand further than normal as it fills with urine. Septra supression, a once-per-day antibiotic, and Ditropan, the 3x per day drug.
On a bad day, I will tell you that Ditropan is our foe. One of Ditropan’s side effects is overheating, something that is not fun to deal with over the summer. Let’s just say we were homebodies on super hot days because Eliora would reach over 101 degrees in a snap. On a usual day, however, I am thankful that she has been infection free since the start of her new cathing regimen and medication.
The benefits of her medications certainly outweigh the side effects. Soon enough (not too soon, though), we will begin to consider surgical options that will allow Eliora to cath through her belly button, but she will still have to take the meds.
For the many:
Got a kid that doesn’t like being cathed? There’s a surgical option for you! It’s temporary, but a help: urethral dilation.
For those who are wondering why on earth we would want Eliora to have surgery (mitrofanoff) that would allow her to be cathed through her tummy, here’s why:
1. We would hope it would make it easier for her to self-cath when at school.
2. In the event she were to need help cathing, we don’t want creepers having access to her privates. Enough said.