Sunday, January 9, 2011

The Kid Can't Seem to Get a Break

My poor Maevie.
We threw my sister a surprise party on November 20. A bunch of her friends and a lot of my family showed up to celebrate my little sis turning the big 3-0. We had a ball and she seriously had no clue. That night, as I attempted to sneak off to put Maeve to bed, I nursed her like usual. Got her in her pjs and then as I was walking to her room, she preceded to vomit all over me. She starting giggling and was happy instantaneously after and slept with no problems. The next night again, vomit after dinner. So that following Monday I took her to the pediatrician. I thought a stomach bug or strep throat. I never thought urinary tract infection, so when the ped mentioned something about the possibility of a catheter, I thought, "Hmm, strange!" I talked to my sis, the ped who said "Let them do the cath", so when the ped said we needed to do it, I agreed. After about 6-8 minutes with me holding my poor girl's legs while she screamed and Mo sat in her seat screaming "Don't touch my sis. Oh, poor Maevie" the doc finally got the catheter in, to find almost no urine. Luckily, she was able to get enough to run the test. I went home with a script and instructions which left me surprised. The doc recommended we take her to a get an ultrasound and a VCUG to rule out any issues with her anatomy.
I left the office confused and frankly nervous. What if there was something wrong with her kidneys or her bladder? What if she needed more interventions or surgery?
I called up the hospital and scheduled the appointment for January 3. My mom spent the night with Mo and we headed back to Children's Hospital of Philadelphia's department of Radiology for a 8:30 registration.
As we climbed into the elevator, a little girl, not more then 10 years old stood behind me clinging to a penguin pillow pet. She was pale, and looked weak. On top of her bald head was a multi-colored snow cap. Next to us, a mom pushed an extra large stroller. Her daughter looked about 6 or 7 and was sucking a pacifier. I heard the two moms exchange pleasantries "Where are you headed?" "We have a spinal tap and then another round of chemo today."
It took me everything in my power not to cry as I listened. Maeve was in my arms staring at the little girl and her pillow pet. I turned and said to her, "She likes your pillow pet, as she has the same one at home." Her mom responded "Yeah, we love those pillow pets. We have a bunch, right? and we always bring them with us here". The little girl smiled a small weak smile and nodded in agreement.
Bry and I walked out of the elevator on our floor and both looked at each other. We didn't have to say anything because we felt the same way.
We were so very lucky. Later, in the waiting room we discussed that in the event she had something majorly wrong with her kidney, it would be okay. She would be okay. We would be okay.
After the ultrasound which took twenty painstaking minutes of me holding the upper body while Bry held her legs. Maeve screamed as they checked her from positions on her both her back and stomach. CHoP is a teaching hospital, and unfortunately we had the new resident in radiology who was not that familiar with the ultrasound machine. The tech spent a lot of time talking the resident through the ultrasound all while Maeve cried and then sucked her pacifier. I believe if the regular tech had performed the ultrasound it may have been about a third faster. But, docs need to learn somewhere, right?
From the ultrasound room, we headed into a big room where the x-ray machine was located. The VCUG requires a catheter to be inserted into the urethra and then dye to be injected. Multiple x-rays are taken of the urinary tract to see if there is any issues, which could be causing kidney scarring or urinary tract infections.
The nurse was so nice and helpful for us and Maeve. Unlike the doctor's office where it took almost 10 minutes for them to insert the catheter with Mo screaming in the background, this time in no less then 30 seconds was the catheter in place. Bry and I were back in the same positions as the ultrasound while Maeve screamed and cried. Another resident came in and examined the x-rays as they came up on the screen.
She mentioned something and I heard, reflux and looked at the screen and immediately my stomach sank. I saw the dye on the one side going up into the kidney. I'm not a doctor, but I knew enough to know that urine should be going away from the kidneys.
Immediately as they finished I scooped up Maevie and rocked her in my arms. She was still sobbing a bit and doing that little gasp as she tried to catch her breath. In those few moments, I felt defeated. I felt sad. My mind started to wander and of course, I imagined the worse case scenario. Bry being the calm one, started talking it out to me. He rationalized each potential outcome, giving worst case to best case and everything he could think of in between. Before the doctor came back to speak to us, I was calmer.
Yes, there was reflux in her kidney. It's called Vesicoureteral Reflux (VUR)and she has stage 2 (out of 5). We have to meet with an urologist to have Maeve examined and the results analyzed in greater detail. From what Bry has gathered through online research (including deciphering a PowerPoint presentation for urologists from some large conference) we have deduced that while Maeve has an issue, it's not too bad. She will most likely have to have repeat ultrasounds and VCUGs yearly and will remain on medication to prevent any further urinary tract infections. The good thing, approximately 82% of those who have stage 2 VUR spontaneously heal within 5 years. In the event she's the unlucky 18%, then she most likely will need some sort of surgical intervention.
So, that's where we are this week. Maeve is not even 12 months old yet and already we've got food allergies and a kidney issue.
But, it's okay. We're okay, and she's better then okay.
She's awesome!

1 comment:

  1. I"m so sorry to hear what you've been through with her! I can only imagine how scary that was for you. Having to hold your child down for a test of some kind is the WORST. It sounds like a very positive prognosis and I'm glad to hear it!


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