Hi All. This is Gerhard, Hailey’s uncle. The feeding tube was put in on 17 November by Dr Porter/ Dr Esterhuizen from Uitenhage. Since the PEG (Percutaneous Endoscopic Gastrostomy) was inserted by Dr Porter, Hailey was discharged from hospital and after a few days at home was readmitted to hospital in Uitenhage due to the doctor’s discovering problems with the liver. Blood tests have been done on a daily basis now and there were signs that the liver is healing by itself. New test results came back earlier today and they showed that Haileys liver has weakened, the specialist, Dr. Jordaan, said it appears to be liver failure; further testing will be done on Wednesday. At this stage another operation cannot be ruled out, that will be done in Port Elizabeth. A transfer to the Red Cross Children’s Hospital in Cape Town also seems likely at this stage. Hailey is still in severe pain due to the wound from the PEG (Percutaneous Endoscopic Gastrostomy) operation. She still awaits the operation for the “Mickey” which is a replacement for the PEG. A PEG is a tube that hangs out, instead of being skin level like the “Mickey”. A PEG can be pulled out easily. The PEG is always in the way and complicated to handle, Cheri always have to find a way to attach it to the skin. The PEG started to irritate Hailey’s skin and that is why the wound is not healing as it should. We appreciate the help from Rare Diseases South Africa that is putting Cheri in contact with a Dietician to help her with the right info about the nutrition that Hailey needs for the feeder. Also a big thank you to all the Doctors and medical personnel involved with Hailey on a daily basis. Hailey has had a lot of ups and downs and a lot of symptoms that the doctors cant even explain the last few weeks. Hailey has a very hard time sleeping, this of course brings her down and she is then very weak for days to follow. Hailey’s condition is still very critical. More updates will follow in the next few days as soon as we know what the next step will be. Thanks again for all the donations received so far towards Hailey’s medical needs. Thank you to all her followers, all her friends, and most of all your prayers. They are very grateful and your help is very much appreciated. My prayers are with you Cheri and Hailey, dont ever give up hope. We are still hoping that Cheri and Hailey will be home for Christmas. Please share this page with your friends and family around the world and make them aware of the horrible disease call VWM.
Posted on: Mon, 15 Dec 2014 18:54:16 +0000
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