Journal

Friday, December 24, 2010 4:17 AM CST

Its been a very very busy year for all of us especially Megan. She has recently had another spinal rod lenghthening at GOSH. Surgery was succesful and they managed to get 11mm which was good. She took alot longer to recover in recovery this time and we were a little worried. Apparently she took longer to wake up and they had to hold her head for 20 mins until the paraylisis from the anaesthetic had worn off. Still we made it home the following day and she is now back to her normal stroppy self lol.

Megan spent a week at Stanmore Royal National Ortheopedic hospital for intensive rehab. She had a very busy week and learnt lots of new things. She is alot more independant now but always wants to do so much more. She will be going for another week of Rehab sometime next year. She spent her week there with Mick as i was playing birthing partner for my stepdaughter. After 4 days of being at the hospital Jenny and Andy are now the proud parents to a baby boy. Little Alfie was born 4th November weighing 6lb. Megan and Joe are completely besotted with him.

We have seen a few specialist with Megan over the past few months who deal with bowel/bladder problems. She had some Urodynamics done which has shown her bladder is too small and this is the reason she leaks Urine. Also due to the location of injury caused by Tumour her bowels will always be eratic. The specialist has said that if the injury was higher or lower it could be managed more easily. The best option for her as we have tried so many things is the ACE procedure. This involves using her Apendix to form a new tube to her tummy, this was she will have enemas into her tummy which will then flush the bowel from the top so hopefully she wont have the accidents she has now. At the same time as this they will also perform a Mitrofonoff and Bladder Augmentation. A mitrofonoff means she will have a hole in her tummy where she can do her own catheters. This is major surgery and she will be in theatre for approx 7 hours and spend some time in hospital. She will then be off school for a few months. Were terrified about her having this surgery but the long term benefits far outweigh things for her. We have told her about the ops and explained what will happen in a way she will understand. She has decided she wants to have it done.

We are all looking forward to christmas and hope we managed to avoid the coughs/colds going around.

I will do a full update in the new year. Wishing everyone a great Christmas and a happy New Year xxxxx

Hospital Information:

Patient Room: giraffe ward and elephant day care

great ormond street childrens hospital
great ormond street
london

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