Asenath & Zipporrah-results from Mayo

[Guest guest]

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 thinks with slow careful guidance she may be able to get some ability to eat 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, hypotonia, 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 gangGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com