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to be trained in resuscitation techniques and it was scary to know that at any time he could have another attack we had nurses helping us out overnight every night which gave us a chance to try to get a good night s sleep the beeping of the monitors and the whirr of the tracheostomy suction machine from one floor down became normal and almost comforting knowing that a highly trained nurse was taking care of our boy and he was such a happy little baby despite everything he smiled a lot and i mean a lot i would say half of the photos we have of him when he was conscious show him with a cheeky grin on his face he seemed to love life and i am sure he never knew that he was ill something that i found hard to fathom at first was despite the fact that we understandably wanted to treat him like he was made of porcelain he actually loved to be lifted up and jiggled about although he couldn t make a normal laughing noise we knew when he was laughing from his face and his goose honk sound which was so distinctive we could hear it from the other side of the house we got more and more used to his cares and started to integrate as much normality into his life as possible i lost count of the number of times i sat with him on the sofa watching octonauts chuggington and olly s my wife claimed secretly my favourite the lingo show he was always fascinated with the colours and noises from the television he loved the snooker tennis and even the way the counter ticked down on pointless we also played with him on his play mat frequently and latterly sat him in his ball pool he was particularly impressed with my juggling skills well perhaps bemused is a better word we started learning makaton baby sign language as we could not be sure if he was ever going to be able to learn to speak and we wanted to give him as many potential communication channels as possible we became more and more attuned to when he was doing ok and when he was struggling in the end i could sense immediately when his tracheostomy tube needed suctioning and just by looking at his facial expression i could tell when an incipient nappy change was going to be in order the normal baby stuff became so mixed up with the extraordinary care we were providing that they all merged into one i would put him to bed at night in advance of the nurse arriving and the routine would consist of changing his clothes and his nappy switching the oxygen monitor to his other foot testing the ph of his tube setting up and starting the feeding machine drawing up all the different medications that he needed in the correct doses and administering them down the tube and of course singing to him reading him stories like room on the broom winnie the pooh the mr men and his and my favourite the gruffalo complete with all the different voices olly was never happier than when me or my wife were being silly with him making funny noises singing jumping around and especially playing peek a boo he loved that game and showed a good deal of intelligence in predicting often correctly where we would be popping up from next i would watch closely for signs of how his intelligence was developing as there was always in the pit of my stomach that lurching feeling that they hadn t yet got to the bottom of all his problems and perhaps there was something wrong with his brain a doctor thought he had spotted ventricular dilation in his brain after the bowel operation but further checks suggested this was incorrect and his brain structure was ok but we always worried and so the signs that he was a very bright and curious boy exploring with his hands and mouth as well as starting to learn how to bang things together and examine objects close up was a joy to behold and gave us hope that perhaps his development would progress well from the age of 5 months to 9 months olly spent a fair bit of time at home with us but there were more incidents that led to further periods of hospitalisation on one occasion we took him to a new tertiary centre where his long term cares had been transferred to for a quick examination and he ended up staying in for a month as they performed more and more extensive tests and tried different treatments for his various conditions the sort of thing had become completely normal for us every time he had a collapse we would call an ambulance rush him to hospital and sometimes he would spontaneously recover sometimes he would need ventilation and there was another occasion when he required time on an oscillator again but each time he would end up back home with us the doctors could not find a label to put on his condition various things like cystic fibrosis had been tested for and dismissed there is a syndrome known as opitz g which for a while i thought he had but when we finally saw a geneticist with olly she did not think it was likely to be that and tests have subsequently proven she was correct in the end they were simply treating all the different symptoms of his illness the hope and expectation of some of the best doctors in the country was that as he got bigger the floppiness in his airways would firm up the narrowness would be less of an issue his swallow would hopefully become safer and generally he would have a good chance at a relatively normal life he would probably need some operations to bring his testicles down although one dropped naturally when he was about 7 months old a wonderful day to correct his cleft palate and to allow him to feed through his stomach rather than down his nose but the prognosis was felt to generally be quite good however they could not explain why he kept having respiratory collapses there were various theories mucus plugging sudden collapse of airway perhaps something a bit further down in his lungs which was hard to see as they were floppy and the bronchioles had a strange arrangement there was never a definitive answer as to why it kept happening the tracheostomy was supposed to have bypassed the main problem with a hole in his neck that he breathed through but this clearly had not solved it on the morning of 10th july 2012 at 9 30am olly had another collapse as usual there was not much warning he seemed fine one minute i had been bouncing him on my knee he had been laughing and then suddenly his oxygen levels dropped we always knew what his levels were because of the monitor we did what we always did in these situations which was to turn his oxygen up to maximum manually bag him and watch him very closely he seemed to recover quite quickly and we started to ween the oxygen back down over the next few minutes but we could not get him below 5 litres per minute which was about 10 times as much as he normally needed this indicated a serious problem and we called the ambulance at first i had thought this was going to be another one of these collapses that he recovered from as usual we had been in this situation numerous times and he always had previously we spent most of the day in our local hospital with him but over the course of those hours his oxygen requirements kept going up by late afternoon we were up to the maximum 15 litres per minute and even this wasn t enough the paediatric intensive care unit at his tertiary hospital had been contacted and they were on their way he was taken into the recovery area with a number of senior consultants including anaesthetists who manually ventilated him using the bagging technique they tried to stabilise him until the paediatric consultant and specialist nurse arrived in the ambulance from the picu what then followed were the worst five hours of my life dozens of doctors and nurses tried desperately to keep my baby boy alive he required constant bagging on full oxygen the entire time they had to give him heart massage so many times that i lost count but it was certainly in the dozens his blood pressure kept dropping and they had to give him numerous doses of adrenaline and noradrenaline to correct this eventually the main consultant turned to me and said two sentences that i will never forget for the rest of my life you do know we re not winning here don t you he said i asked him what he meant he responded well he s dying and i don t know why the sight of my darling baby boy who only a few hours earlier was so full of life and so happy lying unconscious on a hospital bed soaked in his own blood looking so pale was too much to bear i kept having to walk away to compose myself in the end they got him stable enough to transfer him by ambulance to the main hospital where the picu was located all the other times olly had been transferred by ambulance i had followed in the car while my wife went in the ambulance but this time i insisted i was to go with them i knew there was a chance he wouldn t make the journey and i needed to be with him and my wife we did make it to the picu together they put him on the oscillator which had worked wonders for him on two most serious previous occasions but this time it did not work his oxygen saturation levels came up on the monitor and they were below 40 i just knew instinctively that he had been saturating at that low level for a long time in the other hospital they had turned the monitors away from us and in the ambulance they hadn t monitored it at all i knew that had been a bad sign and now i knew the truth at those sort of levels for a prolonged period brain damage is certain the only question is how extensive i knew that already the doctor asked me and my wife into a side room and told us in plain and honest terms that olly was unlikely to survive this and if his levels kept dropping as they had been doing the thing that would be in his best interests was to not intervene he had been an incredibly brave boy who had fought his condition for more than 9 and a half months but his body was telling us he had had enough he used the word progressive to describe his olly s condition he still could not put a name to it but it was clear from reviewing the notes and the way he had and hadn t responded to the treatment this time that his condition was actually getting worse not better as they had previously thought we thanked the doctor for his honesty and went back through to sit by the beside of our beautiful boy my wife asked for the hospital chaplain to come and christen him which he did i found it very hard when during the ceremony the chaplain referred to how the christening is for the rest of his life i knew the rest of olly s life was only going to be another few hours my wife read him a chapter from winnie the pooh the same book we had read to him on the many occasions he had been on life support machines previously in the end it was incredibly peaceful and in some ways beautiful my wife requested for us to hold olly in our arms she sat and cradled him whilst i sat next to them and put my arms around him too the nurse continued to bag him until we said we were ready and then she stopped we kissed our baby and told him how much we were going to miss him but that it was time for him to let go over the course of the next few minutes he passed away he lived until 5 00am on july 11th 2012 the aftermath was a blur we had to organise the funeral we wouldn t have been being true to olly s memory if we had not included so many of the happy memories we had had with our boy in the eulogy my wife s uncle read out our words and afterwards people told me that they had been amazed to be laughing at the funeral of a baby but we felt that was appropriate i also did a reading of the gruffalo and yes i included the voices exactly as i did when he was alive olly was always at his happiest when we were happy and laughing and we had wanted to reflect that there was of course lots of sadness too during the service but we also wanted to say thank you to everyone who had provided unfailing help and support to us in particular the nhs afterwards we went away for a couple of days but of course we had to come back and start rebuilding our lives having all the equipment taken away was hard we put all of olly s toys and other stuff in his room but we would always have the door open i still find it very difficult to look at photographs and film footage of him i had hoped that would get easier with time but it has been several years since he passed away and i still struggle with this i am very glad to have known my baby boy and to have been a father to him i would not change that i m just so sad that i will not see him grow up into a toddler a boy and eventually a man i am certain he would have had a great personality in his short life he showed us what potential he had and it is so tragic it will never be realised and so nearly fourteen years since our first beautiful baby boy died our circumstances have changed we have another son noah who was born in april 2014 and happily he seems to be perfectly healthy we also moved to a completely different part of the country to be in a more rural area we had planned to do this shortly after olly had been born but that had proved impossible on 12th october this year i am going to run the london parks half marathon in memory of olly i am running it on behalf of sands a charity speaking up about pregnancy and baby loss saving babies lives and supporting bereaved families together they are saving babies lives and improving maternity safety and bereavement care through research training and campaigning sands have been a wonderful support to us over the years and we want to raise some money for them to help other families suffering in the way we did and continue to do so it has been hard work training for the half marathon but compared to what olly had to go through it is nothing and it is a privilege to raise money for them please follow the link and give what you can i dedicate this post to my beautiful baby boy oliver seamus eric thompson i will never ever forget the joy you brought into our lives although it was so unbearably brief sleep well baby boy daddy x posted by mark thompson at 15 05 0 comments thursday 4 april 2019 how to improve your poker game use my software one of the reasons i haven t posted much political content on here in the last year or two is because i have been very busy head down on my latest software project which has been producing a piece of poker software called kicker which helps people play texas holdem poker better i realise many of my readers who come for the incisive political analysis may not play poker but for those of you who do please do go and have a look there is a free trial and it helps you to work out what the best play to make in different spots against the opponents you play against there is a lot of mathematics and data crunching going on under the bonnet but it s all presented in a user friendly way to allow you to navigate the decisions on the flop turn and river i d love to hear what you think about it so if you do try it out please let me know there is a feedback section on the website cheers and happy 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