Sometimes there is a downside to blogging in that the medium is both contemporaneous and public. Independently, neither of those things bother me (and even conjoined I'm rarely bothered by them). But occasionally, like today, I feel the need to write about something that is potentially bad. If the blog were public, but the public was reading it a year after the fact, it wouldn't be a big deal because the outcome would be known...there wouldn't be any suspense or worry. Or I could write privately, and since it wouldn't be published to the world no one would know and worry. All I would have is a journal of neurotic ramblings to review at my leisure, something to toss aside and conclude, "Man, I'm so glad that period of my life is over! Who was that crazed person?"
But I don't really want to have two blogs, or a blog and a spiral notebook, or any other combination of journals. As it is I have fifty-odd pages of rough, scribbled notes from my pre-blogging days when I would write while nursing Michael. It may take me ten years to transcribe them into Word. I certainly don't want to add to it.
So here goes. But first, the backstory:
Laurel has had some difficulties potty training. We tried to do it last summer and I quickly learned she simply was not physically ready. She didn't seem to know how to hold and release her urine and instead dribbled a tablespoon or two of pee every 10-15 minutes. So I tabled the subject for six months and started again in January, only to realize that at 2.5 years old she was still peeing the same way. Again, I stopped working with her.
When Michael potty trained in April, I could tell Laurel REALLY wanted to do it too. She was great about going potty and would push out her few drops, but then she'd need to go again almost immediately. I stopped rewarding her for peeing on the potty (since she was fully competent at doing it) and tried to reward her for holding it in a bit. But as much as the child LOVED jelly beans and M&Ms, she could not hold her urine inside her body even if it meant receiving the Almighty Candy.
I mentioned it to the naturopath and he thought it was probably time to examine her bladder to see if her plumbing was hooked up right (we also ruled out a UTI). So off we went to a pediatric urologist, who sent us to the hospital for the ultrasound. The results came back somewhat normal. There wasn't any obvious deformity, but she had some fluid in her kidneys. The naturopath spent a good thirty minutes explaining kidney/bladder function to me and analyzing the size of each and the amount of fluid. Ultimately he felt like there were some potential issues, and considering how long Laurel had been symptomatic, recommended we get an MRI.
Now, for an MRI to be accurate you have to hold perfectly still for a long period of time. Since this is basically impossible for a toddler to do, they have to be sedated. I really struggled with this, and conferred with the pediatric urologist, the naturopath, and her pediatrician. They all thought it was worth doing. But up until the night before the test, I was wavering. It just seemed risky (wrong) to subject Laurel to so much heavy drugs just because she wasn't potty training easily.
Complicating the issue even further, in the week or two before the MRI, Laurel started to pee in larger quantities. About once/day she'd pee maybe 1/4 cup of urine. And she did start to have some periods where she'd not pee for an hour or more. But since she hadn't been drinking/eating much, I didn't know whether to attribute it to potty training or just basic dehydration. But there was enough of a difference that I further worried the upcoming MRI was a needless risk.
We had it last Thursday. Michael spent the night at Grampy/Grammy's as we had to be at the hospital at 8am. And because life is what it is, they didn't call us back until 10:30 so I had to kill 2.5 hours with a toddler who hadn't eaten or drunken anything since the night before. She was HUNGRY. And THIRSTY. I explained I was sorry, that she couldn't eat anything until after they took a picture of her belly, and after awhile Laurel stopped complaining of wanting food and started insisting they take her picture NOW Mommy. Take picture now please. Now pretty please Mommy.
It was probably the only time I actually WANTED that MRI to happen.
Any relief I felt about it all evaporated pretty quickly though. The test, which should have lasted less than an hour, took 1.5 hours...just the sort of thing to put a mother over the edge. And then her recovery, which should have lasted 20-30 minutes, took 1.5 hours. The nurses kept commenting how they had to "really load Laurel up on drugs," how they had to "give her so much drugs," how "that's why it was taking so long for her to wake up afterwards." That's when I learned that they actually had to STOP HER BREATHING for 15 seconds to get the image - a nice little fact I hadn't known before. So I sat there attempting to wake my unresponsive daughter: shaking her torso, flopping her arms and legs, saying her name...and it all was deeply unsettling. Upsetting.
And the rest of the day wasn't any better. She finally woke up and we drove home, but then as the afternoon went on she declined: very lethargic, vomiting, fever of 103.5. It was one of my worst moments as a mother, and I came to the painful conclusion that the MRI was a MISTAKE. I'd made the wrong choice, and my child was suffering for it. I felt simply awful. Even the concept - a three year old with incontinence - sounded silly. Maybe she just needs more time for her bladder to mature. After all (and everything always comes down to this) she only weighs 22.3 pounds.
Laurel did recover. And to be a bit kinder to myself, I'll accept that she probably didn't get her fever from the anesthesia since she also came down with a cough and runny nose (and still has them five days later). But I stuck with my conclusion that the MRI was a mistake. Too much proactivity and intervention, not enough caution and patience. But as with most things I do that I later regret, I recognized that it's over, I can't undo it, but I can move forward knowing I'll never do it again.
Which, ironically, is what I was telling the urologist Monday when she called to give me the results: it was awful, I regret getting the MRI, but at least it is over and done. In response the urologist sighed, and then said, "Well, I have some bad news."
They want to do another MRI. While Laurel's kidney/bladder function came back normal, the radiologist spotted a syrinx on her spine with a "significant" amount of fluid inside. It could be causing her incontinence issues. But a syrinx can also mean many many other problems so they want to get an image of her cranium all the way down to her tailbone.
My initial reaction was no. Not going to do it. The test was awful, I still suspect she had a bad reaction to the anesthetic, and frankly I just didn't want to do it. TOO MUCH MEDICAL CARE - I'M DONE.
And then there's the cost. You wanna guess how much a MRI costs? $1200? Yeah, that's what Ken guessed. Nope. 9K-12K. Course, we wouldn't actually pay that. No, our portion is "only" 20% of that 9K-12K. Of course, it goes without saying we will pay what we need to in order to care for our children. BUT. OH. MY. GOD. It's a good thing I've lost some weight this year because it looks like Mommy is going to be hitting the street corner.
In all seriousness though, in the 48 hours since I talked with the urologist I've come around a bit. For one thing, I've gotten two second opinions and while they didn't expressly say it, they thought I was being a bit nuts in my concerns about the second MRI. Frankly speaking, it could be the least of our worries. The pediatrician was already mentioning spinal surgery - something I'm COMPLETELY NOT READY to contemplate yet.
So there you go - it's out. Now you know why I'm up in the middle of the night with visions of cancer and/or paralysis running through my head. Then contrarily there's the image of the radiologist calling and saying, "Oops! Nothing's wrong - it wasn't a syrinx after all!" Logically speaking I know neither of these extremes will probably happen, but I'm a mother and exist to worry.
And eat. Which is why, if I'm going to hit that street corner to pay for this stuff, I'd better do it before the 50lb bag of M&Ms I'm inhaling hits my thighs.
Wednesday, July 08, 2009
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7 comments:
Oh wow. That has to be scary. There's that fine line of wanting to be proactive and catching things early so you minimize the issues short and long term and then the overdoing it and freaking out over the small things and the unintended consequences that come of that. Fingers crossed the second MRI comes out fine and it all gets resolved.
Phae, you and well, everyone are in my thoughts and prayers. ILY.
J
Hey....do NOT beat yourself up. As moms we are always wanting to keep our kids safe. We had a really hard time potty training my middle boy. MD appts. ALL the time, only to find out HE wasn't ready, but his body was. I was so pissed at myself, but I let it go. I hope that everything is OK with L. Will keep you in my thoughts. Oh....M&M's don't go to your thighs, so I wouldn't feel guilty about eating the whole bag :) Take care!
Sue
Positive vibes and prayers are being sent your way. Let me know if you need anything.
Cynthia
Oh Phae - I am so sorry! I got your comment today and I'm just so sorry to read about this situation with Laurel. Email me sometime if you want to chat. I had the EXACT same concerns about submitting her to MRI and the drugs and the radiation and it was anything but a fun time!
P.S. - I know I am delinquent and I owe you a reponse email from months and months ago; our lives have just been non-stop lately!
Phaedra,
You and Ken are fantastic parents and very strong people. I am so sorry to hear about Laurel's situation and the gut-churning anxiety that most probably wakes you up in the night--as it would most mothers. We have every faith you and Ken will see this through, and Laurel is a strong and brave. Very independent young lady. Our thoughts are with you.
Love, Jeff, Amy and the kids
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