Happy Memorial Day! A special thanks to all of our service men and women for their sacrifices. Where would we be without them?
Last Wednesday, we saw Dr. Karpen at Texas Childrens Hospital Liver Center. This visit was very informative. He does not recommend surgery for Reilly until she is at least 5, because she is so young. She also needs to be a bit bigger, allowing her veins time to grow and to see what her body is going to do on its own to try to correct the problem. The banding should continue for as long as it seems to be controlling the varices. If Reilly bleeds again, we have a completely different ballgame. He recommends that we let her be a kid, while she can. Dr. Karpen is testing for an underlying condition that may be why the umbilical catheter caused the clot - biliary issues, protein issues and clotting issues - because it is so rare, with modern medical technology, that the catheter would be the only culprit. It will be a couple of weeks before we get the results of these tests. We also need to schedule a MRV (venogram) and have the films forwarded to Tx Children's for his review. He still has to review the CT scans because there was a problem with the CD received from CHNOLA. We still have to discuss his recommendations with Dr. Noel (whom he spoke VERY highly of) and determine the best plan for Reilly taking into consideration Dr. Karpen's suggestions and opinions.
We have been invited to participate in the Children's Hospital New Orleans Telethon on June 11 and 12! I will update with more information some time next week. Reilly is presently scheduled for more blood work and a clinic visit sometime next week and another EGD/Banding procedure on June 15.
I cannot say THANK YOU enough for keeping Reilly and my family in your thoughts and prayers. Please continue as we have a long road ahead. We are so very fortunate to find ourselves surrounded with such great and understanding friends and family - we really do not know where we would be without you.
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