Re: again-Kass-Catheterization issues

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Actually they did have her do both the VCUG and the urodynamics tests. Her bladder pressure was not bad and she had no reflux showing, so that was good. How did you know if the bladder wall was thickened? The VCUG is the test where she held almost 500 cc. and just couldn't go potty till her tummy was hard as a rock and she seemed to be in a lot of agony. The urodynamics test was much easier as they felt it unnecessary to fill her as far and stopped by about 250 cc. where they thought she leaked a little urine, although it was a very tiny amount. They knew she was very uncomfortable and was showing reactions to the rising "whatever" and so they knew they had the information they needed and stopped thankfully. It is frustrating knowing they recommended your daughter only need to go three times a day and are not worried about the size of capacity. Asenath goes much more frequently than that in her diaper. She had a urinary tract infection a month ago when she first went to the urologist and she complained about her diaper bothering her a couple times (which now we think must have been pain from the infection) and she had a strong urine smell, but otherwise no major complaining of pain as I know infections to cause. Of course Asenath is used to lots of pain and so has a high tolerance which would explain that. BUT, I am concerned that if she has no reflux, no high pressures, no mention of thickened bladder walls, and goes on a regular basis, then WHY do we need to cath her? Does Dr. Kramer recommend caths overly much? He mentioned another Mito mom saw him with the same issues as Asenath's due to a stroke, like Asenath, and he started having them cath her son the same day we saw him. But what really worries me is the fact that one of the very first things he said to me was to ask if I was open to cathing her; even before any testing or even talking to us. How do I make decisions like this on my own? If she doesn't need it, it seems cruel to do it, but if she does, then I will do it. I am just real confused right now as to the real need for it. Thanks again for the help. Darla Re: Re: Kass-Catheterization issues Oh sweetie, my heart is just breaking for you right now I am SO with you on not wanting to do the cathing and worrying about whether its the right thing or not. It helps little, but I sincerely empathize with you hun. Madison was like Asenath and didn't seem to sense the urge to go till we started the cocktail and almost over night she was fully trained (and there had been absolutly no signs it was going to happen anytime soon). Course, you all already have her on the cocktail and we all know how differently each of these kids respond to it. I wonder though.......if you do the cathing and the bladder is not always full if maybe this might lead to a little more normal sensation in the long term?? I really don't know if it works that way, but it seems like it might be possible maybe. Unfortunatly, while we are giving Madison meds in hopes of helping things, its really been the every two hour schedule I think thats made some difference for her and the urologist seems to agree. He still wants her on it and we're assuming its helping her be able to release more effectively, but that she is trained I think is what makes all the difference between our girls. That and getting some control of her rectal constipation. I am guessing that they did not see reflux or that they were able to determine how much residual she might be retaining after voiding (assuming this since you mention they had to use the syringes to empty her out), so thats a good thing, however something that CAN change if things are not controlled. Where your stuck is in how to control it!! ARGH!! Sorry for rambling here....just king of thinking out loud and probably not helping at all!!!! And yet, I continue, just in case.....LOL. So...I am gathering that all they did was a Urodynamic study and not a VCUG (where they have to lay on a table, have their bladder filled, and then urinate on the table while having pictures taken)?? Wondering why, though maybe it has something to do with her not being trained. Still though, I know there are folks with even babies that have been able to do the VCUG, so not really sure. I am wondering about this because it was very informative for Madison in that we determined from it that her bladder wall was thickened, indicating recurrent infections (we knew of two that we essentially caught by accident, but she really has no symptoms when she has them) so we were able to put her on daily antibiotics to try and ward them off. The recurrent infections just put her at more risk of reflux and indicate that while the testing did not show much residual, there are obviously times when there is residual that allows the infections to harbor. Seems like knowing this with Asenath might make the decision a little easier (as in, if she's getting recurrent infections, there really just is no option, but if not, maybe there is some leeway). I don't know!! FWIW, here is what we were told......they want Madison to urinate three times a day, whether its a small amount each time or more doesn't seem to matter. If she goes over 18 hours, then we need to cath her, but otherwise its not necessary. The impression I was given in our case was that the biggest risks were the infections since there has already been bladder wall thickening, rather than the enlargement being "that" big a deal. Why there seems to be some difference in the response to essentially the same issue (enlarged bladder) in the girls I am just not sure about. Finally, and I promise to hush then<grin>........is there any chance you might try putting A on the potty every couple of hours during the day and atleast trying to get her to go?? Madison often has to really bear down to get anything out. I don't know Darla....grasping at straws with you hun!!! Please keep me posted on things there and know I am here if you need to talk hun. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Updates (http://www.caringbridge.org/tx/mitowhat/) "Life is not measured by the breaths we take, but by the moments that take our breath away" Unknown Darla Klein wrote: Asenath is not potty trained yet. She has went only a couple times on a potty chair but seems to not feel the urge to go. Even when they used the cath yesterday they had to use syringes to empty her completely because she only went a little and they knew she had tons still in the bladder. I just want to make sure I am doing the right thing by starting the caths. If meds could fix it or other things I would prefer to do so. There is also another side of me that wants to hide my head in the sand and say she still is going regularly quite a bit so why should we be worried. She has had problems for quite a while and the docs haven't sent us to a uro before, so is it that important. On the other hand, what the doc said made sence and I do not want to hurt her bladder/kidneys further. I just don't know how it will work doing it myself with only the older girls to help me hold her ! still. I hate to have to do this!!! I know I can and will be able to do the task but also really hurt for Asenath and the stress it will cause her. Thanks for the help, Kass. You are the one I thought would answer me first on this one. I appreciate your guidance. :)Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com