Family Life

Family Life

Tuesday, January 4, 2011

Monash Medical Center Jan 2010

Toby spent 2 weeks in the Moansh Paediatric Intensive Care Unit. and a further week in the childrens ward. His first night, went really well I was afraid that he would prove me wrong now that things seem like they were going to be investigated. I was horrified to arrive at his bedside to see him sprawled out on an open cot, one just like the ones they used when things were bad in the ICU in Hobart.    I was told that it was just for precaution, but seeing him like that opened some very raw wounds for me.  Toby had a rather peacefull night as I slept or rather didnt sleep on an uncomfortable recliner by his bedside. It wasnt untill about lunchtime the following day, I had gone to organise a room for me to stay at Ronald Mc Donald House, I also despirately needed to express and thought the night there was little chance of being able to in the ICU environment.  I returned to find Toby surrounded by drs and nurses and my heart sank as I was told that he had had a pretty big episode. He continued to have several episoded a day and frightened the begeevers out of the medical staff and I. I was beginning to think that we got him to hospital just in time as his episodes were more and more frequent and much more severe.  
During his stay Toby had many tests in an attempt to discover what was causing his condition. he had an Echocardiogram of his heart, an EEG and ECG, he had an MRI of his Brain and a CT of his airways and chest, many blood tests and a bronchoscopy. 
All of his tests pretty much came back normal, he had mild tracheal, laryngo malacia, where the airways are a little floppy and he had a mild stenosis. his slppe study was a little more revealing showing that he was severely lacking of oxygen when he was asleep, he was having both obstructive and central apnoeas and his respiratory paediatrician decided to put him on oxygen at home, the thought was that he might stop having so many apnoea episoded if he was getting the oxygen he needed.   it wasnt so much because his oxygen levels were always low, but that when he would have even the slightest pause in his breathing Tobys oxygen levels or 'sats' would drop horribly, as he had no reserves and then he would have trouble picking up form there. 
With that in mind and some training how to use a bag and mask for resuscitation we were allowed to take Toby home from Melbourne. The air ambulance came to pick us up and we were flown back to Tassie. Toby spent another night in the burnie hospital while his home oxygen was organised and then it was up to us,  we were so glad that he was home, but we wernt taking any chances with him,  his apnoeas had slightly improved but he could still scare us with some pretty big ones,  I think that we were just learning how to handle them a bit better.

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