Family Life

Family Life

Saturday, January 29, 2011

Feb 2010 - April 2010

Toby spent many more weeks in the ICU after that episode, he also had many more episodes. and often scared the nursing staff, doctors and both mummy and daddy. No one could trust him, and it took a long time to convince the paediatric war to accept him so that he could transfer out of the ICU environment and Begin to get some normality into his life. he wanted to play, but he was greatly restricted to his cot and a small mat on the floor, in a windowless room. it wasn't ideal for a growing baby. In March Kent and I made the difficult decision to relocate  to Hobart. we had been separated form our family for way too long, Kent would travel back and fourth for work and the other children were attending school and staying with my mother, I was only seeing them once a fortnight as the other weekend they would visit their father. it was hard on us all, and we were all at breaking point. Kent and I spoke to Toby's doctors and we were told that it might be a a good Idea to relocate so that Toby could be close to the ICU if he needed it and after such a long time, and some pretty horrible experiences we were no longer in a hurry to take him back to Burnie, we just wanted him safe.

We hunted and hunted for a rental and at the same time Kent had to prepare our home in Somerset so that we could rent it out. there was no way that we would be able to afford to pay a mortgage and rent a property in Hobart. Our money was running out and I had to go back to work so I took on some night shifts a the hospital to help us get back on track, unfortunately life still goes on and the world keeps spinning around you even when you have a sick child. oh how nice it would be if the bills would stop coming in.

In March Toby had a follow up to his hearing test. and we were totally blown away when we were told that it was again, not good. heartbroken, we listened as we were told all about hearing aids and cochlear implants, hearing tests, never ending trips to Melbourne and the road that was being mapped out for us. we never expected it, yes we both knew that It was a possibility but you never expect to find out that your child actually is deaf. we never really prepared for that outcome. and here we were propelled in to this new state of dealing with his hearing loss and the grief that we were feeling. Toby was still in the ICU and we were also trying to come to terms with moving our family. this was not a good time for any one in our little family but we pulled ourselves together and threw ourselves into learning different ways to communicate with Toby as he grows. and we prepared ourselves for more tests and the eventual fitting of hearing aids.  We decided then that we would not let anything stand in Toby's way and we were going to do anything needed to help him along.

Week leading up to Feb 28th 2010

Toby and I were home form Monash, and it appeared that things were starting to go along smoothly, He was still having his apnoea's but with his oxygen we were able to handle them better and they ar not quite as scary when you can actually do something about them. But he was still having that period at the beginning of the apnoea where his airways would close down completely, and we couldn't bag "resuscitate" him at all, we just had to wait and that time was always horrifying.
Having the oxygen at home meant juggling tubing, machines and tanks. and we never went anywhere without his bag and mask, just in case!. and the following weekend, the 29th was no exception. we were settling back into our lives again. and Larissa had her State Surf Lifesaving Championships, that was held at the Burnie beach. we all went along to cheer her along while Kent had to work. I loaded Toby and the kids up along with his oxygen and all his bits and bobs and we headed for the beach.   It was a beautiful day and Larissa did very well considering it was her first ever championships. Towards the end of the day, it all went horribly wrong. Larissa was preparing for he final event and we were trying to find her amongst the sea of little bodies in the marshaling area. Toby decided it was time he got some attention and he promptly had one of his apnoea's.  only this was bigger than normal. I whipped out his mask and started to resuss  him. there were plenty of onlookers and someone went to get help from the surf life savers who were on patrol while someone else called for an ambulance.  I managed to get Toby breathing again and as I looked around at the horror that was on everyone's faces I sighed a huge sigh of relief. That one seemed to last forever!   when the ambulance arrived Toby was fine, he was perfect in fact but the Ambos wanted to take him to hospital anyway, and the surf life savers I declined as I explained that we had just got back from Monash and we were told that we probably should get use to it and that we don't need to go to hospital with him unless he starts having too many or we are worried.  As it was not unusual for him, I wasn't overly keen to spend hours in hospital, get admitted just to be told that there is nothing they can do for him and that we would get use to it.  he was OK now, so I took him home. 
Kent arrived home not long after us, we unpacked the car and gave everyone a shower to wash off the sand collected from our day at the beach. Kent went up the shop to get some hot chips for dinner as we were both too tired to cook.
As he left, I was preparing a bottle for Toby while he was playing on the floor with Aimee.  He decided to have another apnoea. only this one was BIG,  so much bigger than all the others. When Aimee called out to me.... MUM TOBY'S GONE BLUE!  I rushed to check on him and he was unconscious, blue and clearly not breathing, i calmly got his bag and mask out and attempted to bag him, I got no response, he was still in laryngospasm, I couldn't get any air into his tiny lungs at all, I held the mask over his face and called for Larissa to fetch his pulse oximiter so that I could see more clearly what he was doing. he was still not breathing and as I was attempting to resusctiate him I was getting nowhere, it was like attempting to bag a brick wall!. his airways had completely shut down. I attached his monitor and the numbers were not good I got a reading of 32% then nothing as his peripheral pulses were non existent, his heart rate was dangerously low, I kept trying to resuscitate him as the time seamed to have stopped. this was much longer than any episode he had ever had, as Toby lay limp on the floor,  I calmly told Larissa to call the ambulance and I was relieved when they were on their way, I was beginning to be able to finally get some air into his lungs and his colour was starting to slowly return,  it had been about 8 minutes since he had stopped breathing. Kent came in the door and was horrified to see what had happened while he was picking up dinner. we both crouched over Toby, helping him to breath, desperately waiting for the Ambulance. Aimee, Anthony and Larissa all crowed around, wondering why he was not breathing yet. I had to ask them to stand back, I was really starting to panic and I didn't want to show this to them, they are all old enough to know how serious this was and the only thing that was keeping us together was that I was pretending to be so calm,  god only knows how I didn't totally loose it, I guess you just do what you have to do.   
Then the miracle... Toby started breathing on his own, he started to cry and with in no time he was looking at us like he had no idea what we were all doing and why were we all standing around him. I could breath again too. but I knew that this was not good, I knew that we were definitely going to the hospital this time and I knew that he'd be flown pretty quickly out of Burnie back to a Paediatric ICU. Toby was fine by the time the ambulance had arrived. again!   He still had his oxygen turned right up and he was still very pale, but he looking around wondering what all the fuss was about. we went back in and sure enough the retrieval team from Hobart had to come to collect him. I kissed him gently on the head as he was loaded onto the NETS stretcher and I quietly said a little prayer to myself, praying for him to stay safe.
His flight doctor and nurse both knew him well as they had flown him to Monash and had cared for him for 6 months while he was in the NICU. I knew he was in good hands  but I was still terrified for him. and I hadn't quite recovered from the days events myself. 

I sipped down a few cans of Bourbon as Kent's parents drove me to Hobart.

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.

christmas 2009

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.

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.