We saw Madi's urologist, Dr. Zuniga, on Wednesday at CRS. He said everything looked good but the ultrasound was showing that one of her kidneys had shrunk. She has a level 5 renal reflux on her left side, and that was the side showing a smaller kidney. He said at this point he is not worried. It is very rare to see a child that has not had any UTIs (she had one but that was over a year ago before the cathing) with kidney shrinkage. He said most likely the difference is due to ultrasound tech error where one of the techs just measured wrong. Either this tech measured it smaller than it is, or the last tech measured it larger than it really was. He did say, though, that when we check it in 6 months, if it is still measuring smaller, we might want to try mixing dithropan with saline and injecting it straight into her bladder after cathing to see if we can help it grow normally. I don't really like that idea, but we shall see. He also said that the amount of liquid her bladder is holding isn't what it should be, but for her it is good and he is happy with the results. The good news is he wants to wait before we do surgery. He said that the standard protocol for renal reflux in kiddos with spina bifida used to be to correct the reflux, just as you wold with a kiddo without spina bifida. He said the problem with that, though, is that you usually end up having another procedure down the line anyway (one to increase the size of the kidneys) and that surgery usually corrects the reflux anyway. I love that he is a "wait and see" doctor, but that means we have to keep her on prophylactic antibiotics :(. I HATE giving her antibiotics like that. I mean I seriously HATE it. I feel terrible every time I give them to her. I give her a very strong probiotic in the morning to help, but it does not make me feel much better. I know they are needed because we have to protect her kidneys, but I worry about it all the time. What if she ends up with pneumonia or something huge, and we cannot fight it because of an antibiotic resistance? I know questioning the future and worrying about eveverything will not help, so I am choosing to remain positive and hope for the best. She is in God's hands. We would really appreciate your prayers, though! Please pray that Madi's kidneys continue to grow. Pray also that the reflux goes away on it's own. Thanks so much!
2 comments:
Uro is my LEAST favorite specialty to follow in the SB world :( I FINALLY posted about our latest Uro adventure...and I can not decide if I am thrilled for answered prayers, or furious that we walked the road we did for so long... but it is a worthy read anyhow!
Praying for Divine Healing for darling Madi!
My daughter had reflux grade 5 in both kidneys and they did a surgery where they disconnected the kidneys from the bladder and then reimplanted the ureters in a different spot on the bladder and now she no longer has any reflux, also the ditropan that is given straight into the bladder has a lot less side effects and my daughter can not object or spit it out like she did with the oral
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