New chair, new toys, all a bit confusing!

Sunday 8 May 2011

New chair

Mummy bought Edward a new chair this week. We had tried one in Oxford and Edward sat very well in it. His other chair is good, but takes time to get Edward in and out, so is no good when he is chocking.

Friday 6 May 2011

Edward's operation

Where has April gone? Edward has now had a gastrostomy and nissen fundoplication, but it was not plain sailing and he has been very poorly. It all started at the end of the operation, when Edward's 'floppy larynx' caused problems and he ended up in the High Dependency Unit. For the next two weeks he kept all the doctors and nurses at Oxford Childrens Hospital on their toes, with a never ending string of problems - intollerance of feeds, diarrhoea, weight loss, muscle spasm, very low oxygen saturation, heart rate alternating between 50 beats per minute and 180 beats per minute, constant screaming and siezures, to name but a few. Oxford finally discharched him, but we ended up in Milton Keynes Hospital 4 days later, where we stayed for another 2 weeks. The medical staff  painted a very bleak picture for Edward, as they often have since before he was born.
Edward finally came home on 16th April with 2 carrier bags of medication, which included 3 different types of strong sedation/pain relief and the reminder that the Complex Care Team can be contacted 24 hours a day!!

Well Edward had different ideas to that of the medical fraternity and certainly wasn't ready to give up on life! He is now on full feeds (in fact dietician has put him on a diet as he was gaining weight too quickly), off all pain relief, sedation and reflux medication and starting to take note of his surroundings again :) He still has trouble with sleeping and digestion/wind, but we are working on these.
So once again this very special angel has shown that hydranencephaly children are fighters and far more reciliant than doctors give them credit for.