Wow! Been a while since I’ve blogged. March was a very unexpected & crazy month for us. It started off great, with a long overdue weekend visiting great-grandparents, grandparents, etc. We came home, went back to work on a typical Monday, and thought we were settling in for a routine month.
We couldn’t have been more wrong.
That week began with a big change in Zoe’s appetite. We had no clue what was up, just that she didn’t really want to eat. Not herself. We attributed it to the three molars trying to cut through her gums. That seemed to be the reasonable explanation for a one-year old. The lack of appetite, however, continued to progress. At first she only wanted pureeds. Then she started gagging on the simplest of foods. Zoe has always had a sensitive gag reflex, but never to the point of vomiting. Our therapists (speech, OT) began working with her to de-sensitize her mouth. We thought perhaps she had some sort of sensory or texture issue to table foods.
The night before our routine spina bifida clinic, Zoe began wanting to refuse liquids. I busted out some Pediasure, beginning to get concerned about potential weight loss. I knew something was up but not sure what. There were no other signs. The next morning, I woke up with a horrendous stomach bug (perfect timing!), but we pressed on to the appointment because she was definitely NOT herself.
Our first stop was her eye doctor, and thankfully, he deemed her eye surgery a complete success and clears her for 6 months. First time we’ve ever gone longer than 3 months seeing the eye doc.
Next stop–urology. Here is where we have our “ah ha!” moment, but at the same time, that “oh crap!” moment when you realize the spina bifida bogeyman has just jumped out of the proverbial closet.
Upon explaining the situation, I watched the urologist’s facial expression change. Immediately. He begins calling for a urinalysis. Then lots of talk about leukocytes, nitrites, hematuria, etc…terms I know from my clinical practice all too well.
Her first UTI.
I knew she’d just bought herself a round of antibiotics. I was floored when he tells us we need to begin cathing again. NOT what I’d expected. After reviewing her renal ultrasounds, her hydronephrosis (swelling around the kidneys) which has always been mild and alternated kidneys, is now on both. I knew we had walked the line of needing to cath vs. not cathing for some time. Just didn’t expect it that day.
Off we go with a brown sac loaded with catheters, lots of instructions, and a 2-week follow up visit. My mind was already churning. What has changed? She had been so stable with urologic stuff. Does this mean her tethered cord (something all people with spina bifida have–basically scar tissue that forms from her initial back surgery & adheres to the spinal cord) is actually becoming symptomatic? Why must we deal with yet ANOTHER issue? Can we please just catch a break for a while?
Up to meet with ortho next. Zoe has been doing fantastic recently wanting to pull to stand. Her knees are still weak, and I am almost at the point that I want to push ortho to order her some KAFOs. Her knees are holding her back. Ortho comes in, obviously not concerned about her knees. We hear yet again, she needs more time. Wait and see. Those famous three words that could sum up spina bifida in a nutshell.
He wants to fix her right foot. Another surgery. What? It was as if the spina bifida bogeyman had been storing up all of this and dumping it on us at once. Yes, I knew her right foot caused us a lot of trouble. Her achilles tendon is tight. Has been since she was born. We have stretched, and stretched, and braced to no avail. It’s time to fix it. So off we go again, with pre-op instructions, casting instructions, and more waiting.
Thankfully, March is over. April has come and with it the arrival of spring and hopefully some new stuff. I don’t even care what new stuff at this point. Flowers, Easter, sunny days, and oh, hopefully a straight foot and a healthy urinary system. Through that in there too.
Cathing is not bad (especially for me, since I’ve done it for a living now for eight years!), and even my amazing babysitter & mother have learned. John’s a pro, too. I am very thankful. It’s quick, painless, and at least we have peace of mind now knowing she is healthy. We also got some peace of mind for now that her new UTI is not a result of a symptomatic tethered cord. After repeating her urodynamics study (a quick test to evaluate bladder function & kidney reflux), urology determined that while there were no major changes since her last test, and that while her abnormal results are “minor,’ it is enough that for now we remain with a cathing schedule and follow-up in three months. Fine by me.
The tendon release surgery was not bad. I actually ended up being excited about this. I want Zoe to have the option one day of pulling to stand WITHOUT braces–if she gets strong enough. By not having this tendon release, we were totally eliminating that as an option because her ankle just rolled and was unstable. Her cast is cute, she basically ignores it, and my biggest complaint is how heavy she is in it. And also the number of crazy looks I get taking her out in public by strangers who probably are wondering why in the world this child’s leg is in a cast & if I caused it or not.
That’s another post for another day though.
For now, we are settled, it is spring, so happy April 1st everyone (and no, this is no April Fool’s joke 🙂