Toby continued to have his apnoeas, and his paediatrician continued to argue of the extent of them, he simply did not believe that Toby could be doing what he was definately doing. his episodes were getting more frequent, and he was taking longer to recover. Early December 2009, Toby had a hearing test, he failed his newborn hearing screen just before we left the ICU and this test was more advanced to see what the problem was. Toby was diagnosed with a severe hearing loss, we were so shocked as we thought that he was showing signs that he was hearing us, we couldnt believe it. His test showed that he had a neurological type of hearing loss and the audiologist was hopefull that as he grew a little bigger it may improve so he was booked in for another test in 3 months. we were sent home to watch him, and watch him we did, we did so many home tests, hopefull that he was hearing us but we continually received no response from him, and it becam obvious that Toby was responding well to visual stimuli and that is why we assumed that he could hear. He never responded to noises that he couldnt see! We remained hopefull and tried to put it out of our mind as christmas was approching and we were still trying to cope with his increasing apnoea episodes.
Christmas came and went, it was a quiet affair in our household as Aimee, Anthony and Larissa were spending it with their father, we enjoyed a lazy sleep in with our littlest man and then watched the surprise on his face as we helped him to open his first ever christmas presents. The kids came home on boxing day and we celebrated all over again. its so much fun and so very special to have children in the household opening their presents and enjoying testing out their new toys.
Tobys apnoeas continued an I pleaded with his paed to listen to me. I ended up taking a picture of Toby in the middle of one of his episodes to prove just how severe they were, once the doctor see the picture he immediately ordered an ultrasound of Tobys brain to see if there was a cause for the episodes.
nothing important showed up on his scans. but one day Toby had so many apnoeas that we had had enough. we took him back to emergency and pleaded with the drs again. this time they admitted him for observation.
That night Toby had a rather unremarkable night, like usual he was pretty safe while he was asleep, it was when he was awake that he had most of his apnoeas. it was January 28th 2010, and the paediatricians come to do their round in the morning. They said that as Toby ahd been in hospital ovenight and had not had any issues that we could take him home. I refused. I stressed that we could no longer cope without help, we were at the point were we couldnt even take him for a walk as everytime we put him in his pram he would have an apnoea, he would have one when he was put in the car, he would have them when he was put on the floor to play it really was rediculous. the Doctors, discussed this with me and and then went away to discuss him amoungst themselves.
only minutes after they were gone,Toby must have decided that it was time to show them what he can do. he stopped breathing and dropped his heart rate dangerously low. the nurses immediatedly called a Code Blue. and attempted to ressuscitate Toby, however it was trying for them as they had not previously checked the besdide equipment, and there was not resuscitation equipment near by, they had to run to get it. I think they too did not really believe my stories about his apnoeas! well they do now!
by the time the doctors came Toby was breathing again but had scared them enough to make the doctors call Hobart ICU and discuss Toby with them.
The Doctors in Hobart suggested that they put an IV line in just incase they needed to give Toby emergency drugs if he did it again, and he should be sent to Melbourne, as there were no beds left in the PICU in Hobart.
A bed was organised for Toby at Monash Medical Center PICU, and Toby was prepared for his flight. I had to hlod him while the doctor tired to put inhis IV line, and Toby again thought it was time to show the drs what he can do, he stopped breathing again. the Doctor was not expecting the severity of this and I think it shocked him, I grabbed the bag an mask and began to resuscitate him myself, before the dr took over. By this time the Dr was in a hurry to get him to Melcourne and so were Kent and I.