Last week, my Peanut had bladder and renal ultrasounds done. We do these annually, because of her neurogenic bladder. She does urinate on her own, but she never completely empties her bladder. She was getting repeat UTI's for a long time, so we did a VCUG. That was in February 2007, and we started catheterizing her then. We put a straight cath in at bedtime, tape it to her leg, thread it through a hole we cut in a diaper, and let it drain into a pull-up. She has not had a single UTI since we started cath'ing her.
Unfortunately, the ultrasounds last week showed hydronephrosis in both kidneys. Now I have to catheterize her every 6 hours. We go to the urologist in the middle of May. He is going to order a repeat ultrasound in a month or two, to see if the 6 hour cath'ing helps the hydronephrosis. If not, we will move it up to every 4 hours, and wait a few months and ultrasound again.
The part that worries the urologist is that she has never shown signs of hydronephrosis before. Her kidneys have always looked fine. This scares me as well! Is this something that gets worse and worse, or stays the same? Does anyone else deal with this with their kiddo??
How in the world am I going to catheterize her every 6 hours? It takes two adults to do it. One to hold her and one to cath her. We do it at night when I either have a nurse or my husband to help me. How in the WORLD am I going to do it during the days, when I have no nurse???
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
6 comments:
I'm so sorry you have to do that more often. I'm sure you'll become a pro in no time.
I wish I knew more about this, and had advice for you. Im so sorry you are going to have to do this alone.
One thing I have learned is that we moms always figure a way to do things, even when it seems impossible.
THinking of you....
Why don't you contact Cathy (www.annabelgrace.blogspot.com) - she has had to do that for Annabel, and I think more often than every 6 hrs. She might have some tips. She is amazing.
I'm so sorry to hear this! Praying that you find a way to do this on your own.....if I were Peanut, I'd put up a fight too! But, this won't be easy on Momma! Hang in there!
I wish I had some answers or advice for you about the cath. Marissa has hydronephrosis due to vesicoureteral reflux that she had surgery to correct in January, but we never had to cath her.
I hope you get some answers soon,
Alicia
We catheterize Esther-Faith every three hours because of her neurogenic bladder. Her last VCUG showed some reflux, but no hydronephrosis. They ordered a urodynamics study (have you had one of those?) to see how well her muscles work. She has a renal ultrasound every year and the VCUG and urodynamics study every other year.
You can email me if you want about the cathing. We do cath Esther-Faith, and I'm more than happy to answers questions "in person." (rather than in a comment) (email: henn.16 (at) osu.edu)
Know that I'm praying for you.
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