We try to schedule her appointments and medical tests so that she doesn't have to miss school. Missed school time or days are excusable with a doctor's note and in Anna's case, we would be able to obtain a note and have that time excused. However, the girls don't like missing school and I don't want Anna to be bummed out that she missed something at school because she has spina bifida, which is how she would think of it.
First up was the VCUG. Lucky for us, there were some openings at the end of August in Waltham, so not only did we not have to drive into Boston but Anna didn't have to miss any school. I brought Anna to that appointment and she was such a rock star. While the procedure itself is fairly painless, it can be extremely uncomfortable. Her bladder was filled, via a catheter, with a dye/contrast solution and x-rays were taken. At one point, she was looking at me with such discomfort in her eyes. I felt terrible. And to add insult to injury, when they were done and told her she could empty her bladder, she couldn't. She had to wait for me to cath her.
We called that her special princess gown.
When Anna was a baby, she was diagnosed with reflux (grade 2) in her right kidney, which means that urine could back up into her kidney from her bladder. She had a VCUG in 2008 and another in 2011. Both showed no signs of reflux. I thought, maybe stupidly, that reflux would not be an issue in the future. Unfortunately, this VCUG showed signs of reflux in Anna's right kidney. After we had just fought to have her dosage of antibiotics reduced to every other day, it was changed back to daily. Her intake of ditropan, which improves bladder function, was increased from twice a day to three times a day.
Because the VCUG showed signs of reflux, the urologist told us that he would like Anna to undergo a new procedure (for her) to check for scarring in her kidneys. I have to say that this threw me off guard. I knew that this could happen but I wasn't expecting to hear that it was a possibility with Anna.
We were able to schedule this scan for Columbus Day. The procedure starts with an injection of some type of radioactive (yeah, awesome, I know) dye into her bloodstream and then a three hour wait before a scan of her kidneys can take place. Anna didn't cry when they pushed the needle into her vein. She gave me that look again though. Poor baby. The nurses said she did better than a 15 year old boy.
The scan part is painless but for the fact that her body was wrapped tight in a sheet so that this machine
could rotate around her. She had to be very still for 16 minutes. Well, I can't remember exactly how long it was. I think it was 16 minutes. Could have been 18. She did a fantastic job and the scan was readable. We had been told that in some cases, they have to re-do it if there's too much movement.
We've been trying to schedule a follow-up appointment with her urologist. He has the equipment in his office to perform the urodynamic study so we obviously want to schedule one appointment in order to limit missed school time. He only does that type of testing on certain days of the week so we are in a bit of a holding pattern right now. But Rich was told over the phone that the preliminary write-up from the scan stated that there were no signs of scarring in Anna's kidneys. Yippeee!! I'm keeping my fingers crossed for more good news. Or no news because sometimes no news is good news.
If you haven't read this, here's a related post from a few years ago - Everything you need to know about cathing
7 comments:
This was a really informative post-as was the cath post (I reread again).
I would not know anything about spina bifida if i hadn't been following your blog.
Thank you!
Brave munchkin. The machine kind of reminds me of an MRI when you have to stay SO still. Here's hoping no news is good news!
Also, and this might be too personal a question, so obviously you don't have to answer... but I remember you mentioned that with the nerve damage she doesn't have the feeling of needing to pee, but you mentioned in one of your recent posts (flight to Disney maybe?) that Anna told you she needed to be cathed. Does she have some feeling? Maybe the same as what you meant when you talked about the discomfort of the dye appointment earlier in this post? (I can't imagine someone filling my bladder up.)
Does that mean that Allie and Em's reflux may have returned?
She can definitely feel when her bladder is full and will let us know, which is good.
Allie and Em had odd shaped openings between their bladders and their right kidneys, making it easier for reflux to happen. They had tests done when they were toddlers and we were told that it had corrected itself, which usually happens in those cases. Plus, haven't had any UTIs, bladder infections, etc since the testing. Unfortunately, in Anna's case, hers was a bit worse and they are saying that the reflux can come and go. :(
My Sarah had all these tests over the years, repeatedly, at CHB. It was not fun. She was on ditropan and preventive antibiotics(for UITs) for over 10 years. Finally, she outgrew the reflux, right before she got her period for the fist time. They were just about ready to schedule her for the 'deflux procedure' but luckily she didn't need it.
I hope Anna's reflux settles down in adulthood.
Thank you for answering Sarah - definitely good that she can feel and let you know when her bladder is full.
I hope her reflux gets better again soon (and stays gone next time)!
That truly is a princess in that "princess gown" - so beautiful. I am so glad there was no scarring on her kidneys - yay! She is so brave!
Katlyn
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