Family Life

Family Life

Tuesday, January 4, 2011

what its like being at home

When Toby first came home, everything was fantastic,  we all loved living like a normal family for a little while, however it was short lived,  within days it was obvious that Toby had not grown out of his apnoea spells, and once I had happened to check on him while he was asleep in our room, and to my horror he was so very blue, swolen and obviously not breathing, he had no digns of life, yet his damned apnoea monitor was still flashing to say that he was breathing,  I picked him up and went straight to work to get him breathing again, it took a fair bit of rough stimulation and I was about to start mouth to mouth resuscitation, I was terrified, All the feelings of the ICU came rushing back in one very large tidal wave.  but he soon started to breath and within minutes he looked like nothing had happened,  a perfect angel.  
This horrifying turn of events began to happen frequently over the next day or so, and as we became increasingly concearned we called the hospital.  we were terrified of losing him, but we were also terified of having to break up our little family again after such a short time.  Toby was readmitted to hospital but managed to stay in the Burnie Hospital.  I had several arguments with the local paediatrician as he did not believe how serious Toby's apnoeas were, and could not believe that his alarm would not go off.
After a night in the childrens ward the doctors spoke to the ICU team in Hobart and decided that Toby should be monitored with a puse oximiter instead of a standard apnoea monitor. it was looking like while he was not breathing, he was still having tiny little diafragmatic flutters, thats why his apnoea alarm was not set off.    he was sent home with a new monitor and we learned to deal with his apnoeas.  if we caught them early enough all he needed was rough stimulation to help him to breath again. Terrifying but we resigned to live with it, if it ment that he could stay at home with us after all we had seen him do this so many times before.  

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