Re: We made it though the day!
1/24/01 6:16 PM
I want to thank all those for your wonderful prayers. They truly made a huge difference. I had an unexpected calm with me today. I credit the calm to all of you that prayed so hard for us. I was ready. The children's hospital was so, so wonderful with my daughter. They had a lady come out before surgery and go over what was going to happen in "kid" terms. They let her pick out a Lip Smacker flavor (lip balm with fruity flavor) to rub in her mask to put her to sleep. They let them wear the hats that the nurses and doctors wear. They showed them a picture of the operating room. And a whole lot more. Lynn, I did have to "take a stand" today. At discharge the nurse was not clear on the Cortef dosage and sort of like winged it. I politely said I wanted a clear answer and appreciated it if they called my daughter's endo. for details. They said no problem. The anesthesiologist (sp?)  was REALLY helpful. He was very familiar with CAH. I almost fell over. That is the man you want to know about CAH in a surgery. They did stress dose during the surgery. I of course stress dosed her before, after and tonight. We also will stress dose her tomorrow.  Her urethra was scoped and they did a series of xrays. They found some kind of string like stucture within the tube they thought was from the cathader problem we had when her surgery was first done. They "broke" these two string looking things for better flow. Nothing huge. They also concluded that because of the ambiguity, her urethra is u shaped. (they show a drawing of the urethra in effected girls with CAH in one of those handbooks on the internet) This is causing a little bit of "backwash" of urine.  Not a great amount but he said perhaps enough to be causing these problems. So all and all there was no black and white answer as always in the land of CAH, but we know it is not something horrible. If it still is a problem and the problem worsens or turns into kidney infections, then he would do a surgery on the urethra tube. He really wanted to wait until pre-puberty in case her vagina showed not enough room for a tampon, they could make a small adjustment and do all the work at the same time. Perhaps it could be left the way it is, we won't know for sure. But we both agreed a little adjustment later is better than a huge surgery like she had as an infant. I am greatful it was not something life threatening. You know your mind takes off thinking the worse sometimes. Thanks again for your support and prayers. Please continue the prayers for tonight, for fear of fever. Thanks again!
Laura
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