Re: Kass-Catheterization issues

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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. Darla Re: Asenath & Zipporrah-results from Mayo Oh {{{{{Darla}}}}}} I am SO sorry to hear all the news from today. I know how overwhelming it all must seem. And little {{{{{Asenath}}}}}}...having gone through the bladder testing with all three in October, with Madison having both the VCUG and Urodynamics, and having to repeat the urodynamics with her in March, I know how hard it is to watch them go through it. And can only imagine how traumatic it is for them really. The uro mentioned when we were there in March that he wants to do another urodynaimcs on Chance when we get back in the fall and Chance has been stressing about it ever since!! FWIW, Madison's issues with the bladder are the same as Asenath's, however since she has bladder control we were able to incorporate both a medication (Cardura) as well as a timed voiding schedule, and we've worked on constipation control and it HAS made a difference for her. The medication is one that relaxes the bladder neck and the reasoning for using it was because we knew there were times when Madison would try to go but could not seem to release the urine. Ultimatly, I think it helped the timed voiding to work when all was said and done, but since Asenath is still not potty trained (am I right about that?? I know you mentioned a diaper at night but suddenly am not sure if she is trained during the day or not) this is going to be impossible to acheive without cathing her. Ideally, if a timed voiding schedule during the day is not possible, hopefully the cathing will approximate the same thing and this will not necessarily be a long term issue.....atleast the daily cathing that is. Ultimatly, Dr. Kramer (our uro at Mayo) was honest with me and says cathing is in our future at some point, but hopefully we can put it off for as long as possible. At this time, we'll only need to do it if she goes longer than 18 hours without urinating, and so far we have managed (some days just barely) to avoid having to do it. I am assuming constipation is not an issue for Asenath?? If it is, or there is any chance that it is, I learned when we were there and went through the testing initially with the kids just how much constipation can impact bladder issues, with either a child that has a spastic bladder or one like our girls that holds on to too much urine. Just something to be sure is not having an impact on things while your trying to find some kind of treatment. Our last visit to Mayo Madison's testing, after approx 6 months of the Cardura and Miralax and the timed voiding schedule, her urodynamics showed a much more normal capacity. We still have to watch it and continue the course of treatment, but atleast for now we have avoided the regular cathing. I am so sorry to hear about Z's swallowing issues. Glad to hear they are proceeding with a sleep study to ensure she's getting the help she needs. Sure wish none of it was necessary though and am so sorry you all are going through so so much over there. Thoughts and prayers are definatly with you 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: We had a very long, tiring day and I feel so sad for Asenath as she had two catheter tests today that were very difficult for her to deal with. The results revealed that she retains quite a bit of urine and holds way more than she should. Norm for her age is about 180 ml, but she held up to 460 ml. We knew she held tons as her night diapers are huge. Dr. Mason (urologist) wants us to begin to cath her FOUR times a day to help shrink the bladder down to the normal size. He doesn't think it wil totally work due to her many stroke issues, but hopes it will help some at least. He said if we don't start to do something now she will only get worse till the point where she needs total catheterization because the bladder will stretch too far. QUESTION: Are there any other options I could try first such as meds? Two caths were hard on Asenath today and she has had such a rough time lately. ! I just HATE to even think of needing to do this to her every day that often. If I have to I will and am confident I can do it, but I just hurt so much for her knowing how scary it is for her and how she doesn't understand WHY she needs it. She often tells us she will be good and that she isn't being bad when she gets IV's and other pokes and no matter ho often we tell her we are trying to help her not hurt her or punish her, she doesn't understand. Please pray for me to be able to help her understand and handle this developing issue. Zipporrah had a camera tube inserted through her nose into her throat to see how she swallows and was found to not be able to swallow well at all. We knew this but did not know the severity of the problem. Dr. (ENT) tried to have her swallow colored applesauce and found she just couldn't do it. It just remained in her mouth. The doc think! s with slow careful guidance she may be able to get some ability to ea t orally, but does not expect her to get everything back and worries about the possibility of future aspiration issues or breathing issues. We discussed further the tracheal ring, tracheomalacia, and the continual night breathing problems and this combined with the swallow issues makes her very concerned of central apnea and breathing obstruction/collapse issues. We will be doing a sleep study and further testing to try to make sure she is safe as well as possibly use more oxygen with her. Please pray for us to know how to proceed with the feeding and breathing issues. I could probably go on but am quite tired so I better try to get some rest. I got up at 5 AM this morning and it is 1 AM now. Thank you all for your prayers. Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hy! potonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah (7 mon) Mito, SLE's, sensory issues, G-tube, asthma, mild tracheomalacia, tracheal ring, major swallow issues/breathing problems, disautonomia...and the gangPlease contact mito-owner with any problems or questions. 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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. Darla Re: Asenath & Zipporrah-results from Mayo Oh {{{{{Darla}}}}}} I am SO sorry to hear all the news from today. I know how overwhelming it all must seem. And little {{{{{Asenath}}}}}}...having gone through the bladder testing with all three in October, with Madison having both the VCUG and Urodynamics, and having to repeat the urodynamics with her in March, I know how hard it is to watch them go through it. And can only imagine how traumatic it is for them really. The uro mentioned when we were there in March that he wants to do another urodynaimcs on Chance when we get back in the fall and Chance has been stressing about it ever since!! FWIW, Madison's issues with the bladder are the same as Asenath's, however since she has bladder control we were able to incorporate both a medication (Cardura) as well as a timed voiding schedule, and we've worked on constipation control and it HAS made a difference for her. The medication is one that relaxes the bladder neck and the reasoning for using it was because we knew there were times when Madison would try to go but could not seem to release the urine. Ultimatly, I think it helped the timed voiding to work when all was said and done, but since Asenath is still not potty trained (am I right about that?? I know you mentioned a diaper at night but suddenly am not sure if she is trained during the day or not) this is going to be impossible to acheive without cathing her. Ideally, if a timed voiding schedule during the day is not possible, hopefully the cathing will approximate the same thing and this will not necessarily be a long term issue.....atleast the daily cathing that is. Ultimatly, Dr. Kramer (our uro at Mayo) was honest with me and says cathing is in our future at some point, but hopefully we can put it off for as long as possible. At this time, we'll only need to do it if she goes longer than 18 hours without urinating, and so far we have managed (some days just barely) to avoid having to do it. I am assuming constipation is not an issue for Asenath?? If it is, or there is any chance that it is, I learned when we were there and went through the testing initially with the kids just how much constipation can impact bladder issues, with either a child that has a spastic bladder or one like our girls that holds on to too much urine. Just something to be sure is not having an impact on things while your trying to find some kind of treatment. Our last visit to Mayo Madison's testing, after approx 6 months of the Cardura and Miralax and the timed voiding schedule, her urodynamics showed a much more normal capacity. We still have to watch it and continue the course of treatment, but atleast for now we have avoided the regular cathing. I am so sorry to hear about Z's swallowing issues. Glad to hear they are proceeding with a sleep study to ensure she's getting the help she needs. Sure wish none of it was necessary though and am so sorry you all are going through so so much over there. Thoughts and prayers are definatly with you 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: We had a very long, tiring day and I feel so sad for Asenath as she had two catheter tests today that were very difficult for her to deal with. The results revealed that she retains quite a bit of urine and holds way more than she should. Norm for her age is about 180 ml, but she held up to 460 ml. We knew she held tons as her night diapers are huge. Dr. Mason (urologist) wants us to begin to cath her FOUR times a day to help shrink the bladder down to the normal size. He doesn't think it wil totally work due to her many stroke issues, but hopes it will help some at least. He said if we don't start to do something now she will only get worse till the point where she needs total catheterization because the bladder will stretch too far. QUESTION: Are there any other options I could try first such as meds? Two caths were hard on Asenath today and she has had such a rough time lately. ! I just HATE to even think of needing to do this to her every day that often. If I have to I will and am confident I can do it, but I just hurt so much for her knowing how scary it is for her and how she doesn't understand WHY she needs it. She often tells us she will be good and that she isn't being bad when she gets IV's and other pokes and no matter ho often we tell her we are trying to help her not hurt her or punish her, she doesn't understand. Please pray for me to be able to help her understand and handle this developing issue. Zipporrah had a camera tube inserted through her nose into her throat to see how she swallows and was found to not be able to swallow well at all. We knew this but did not know the severity of the problem. Dr. (ENT) tried to have her swallow colored applesauce and found she just couldn't do it. It just remained in her mouth. The doc think! s with slow careful guidance she may be able to get some ability to ea t orally, but does not expect her to get everything back and worries about the possibility of future aspiration issues or breathing issues. We discussed further the tracheal ring, tracheomalacia, and the continual night breathing problems and this combined with the swallow issues makes her very concerned of central apnea and breathing obstruction/collapse issues. We will be doing a sleep study and further testing to try to make sure she is safe as well as possibly use more oxygen with her. Please pray for us to know how to proceed with the feeding and breathing issues. I could probably go on but am quite tired so I better try to get some rest. I got up at 5 AM this morning and it is 1 AM now. Thank you all for your prayers. Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hy! potonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah (7 mon) Mito, SLE's, sensory issues, G-tube, asthma, mild tracheomalacia, tracheal ring, major swallow issues/breathing problems, disautonomia...and the gangPlease contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com