I had to track Peanut's post-void residual this weekend. What that means is that we had to watch her diaper carefully, checking it every ten minutes. ALL WEEKEND. It is easy to do, since her diapers have a wet detection stripe on them. They are all white, with two yellow stripes. Once a drop of liquid hits the stripe, it turns blue. This made it easy to leave her in a diaper and shirt (it was hot anyway!) and just visually check it constantly.
As soon as she peed, we had to catheterize her into a cup and measure how much we got out. This shows how much urine her bladder retains after she urinates. Hence the neurogenic bladder. Here are her numbers.
Diaper contained 1 oz of pee, cath'd out 58 ml. Yes, 58! Almost two ounces!
Diaper contained 4 oz, cath'd out 26 ml.
Diaper was dry, but it had been 3.5 hours since she peed and she was getting irritable. Cath'd out 54 ml. Again almost two ounces.
Diaper contained 2.5 oz, cath'd out 32 ml.
Diaper contained less than 1/2 oz, cath'd out 29 ml.
Diaper contained 2 1/4 oz, cath'd out 35 ml.
I have NO clue what normal residual should be, but I'm thinking it's not almost two ounces!! I faxed these numbers to the urologist, now we just wait for authorization for her VCUG. It looks like we are almost definately going to get the Mitrofanoff done within a next month or two.
Anyone else cath normally, do these numbers sound low/high/normal for post-void residuals?
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:
We've been tracking for as long as we've been cathing (in fact, we used to keep a spreadsheet, but now we just generalize). We cath every 3 hours, so most of the time she is dry or just a little has leaked out. It isn't unusual for us to get 60 mls or more sometimes. But I think E-F's normal is b/w 35 and 50. After her last VCUG and Urodynamics exams, we were told her bladder could hold up to 75 mls before it would start to reflux into her kidneys.
I would love to know if you get the Mitrofanoff done and how your Peanut does with it.
Hope that helps!
I have no idea about post-voids, but I did want to send hugs your way. Annalise did a 24-hour urine collection this weekend for her kidney issues, so I was in pee hell with you. Fun! Not.
I wish I could help but urinary is the one thing we don't have to deal with for Jax.
Sorry I don't have any answers for you. Keeping peanut in our prayers.
Let me start by saying I am no expert, just what Annabel is experiencing. Annabel was going on the potty for a few months. WE would get about 50 ml in the potty and then still get about 120-150 mls. when cathing. Today without any potty chair, total cathing is 210-300, way too much. We begin to cath due to the bladder size and trying to reduce the infections due to her not emptying her bladder. Well, the infections continue, the amount is just going up when we cath her.
Yesterday, the urologist told us the mitrofanoff is not an option. Something about colonization and we would still be cathing her with the mitrofanoff and it wouldn't change anything. Our only options are the dilation and the vesicostomy. He says both are good options but since Annabel is having the bowel surgery, he would rather due the dilation that is temp. and see if she can urinate again once the bowel heals. He says that if the dilation doesn't solve the problem we have to look further at other issues such as pressure or other things.
Please keep me posted on your decisions and her progress. It is so good having other and knowing what choices and why.
This reflux you mentioned that you take the erythromycin for is that GI or urinary reflux. If it is urinary reflux, what Gr. is Peanut? I am always curious as to what is working.
He is thinking if the dilation doesn't keep her infection away then there is just another source causing her problems. Please keep me posted, you sound like you understand this way more than myself. You are so faithful with your comments and I appreciate the time you take when you visit Annabel's blog.
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