copied from caring bridge 6/7/2010

Tuesday, July 6, 2010 10:48 PM, BST
We avoided intensive care!!!!!!!!!We had a wobble over night when one minute he was fine and then all of a sudden his heart rate dropped to low 40s and he woke up just screaming, it kept fluctuating between 40ish and the 190s. it took a couple of hours which were a little rocky however we remained on the ward and it resolved itself with some mild sedation. This morning also saw the return of tweedle dee and tweedle dum from yesterday still arguing and bickering! That combined with a nurse who tried to give some medicine meant to go enterally into his port the day could have turned out very different as this would have been fatal.The rest of the day he has pretty much been alright and everything seems to be stabilising. We also had a visit today from Grandma and my beautiful girls, Oliver seemed to perk up when they were here however after they left he was a crying mess and just kept asking for them. This has lead me to believe that maybe the best place for him is at home. I know that a lot of people will think this is a stupid idea especially when he has been so sick however he is just so miserable here. Oliver has always defied the odds, has come through the impossible and has had a stubbornness about him that comes from wanting to be here and stay with us. At present that stubbornness has gone, he whimpers and is experiencing separation anxiety every time I go anywhere (be it the toilet or the canteen as that's as far as I go) and cries if I am out of sight he is also not communicating at all if there is a nurse in the room and spends as much time as possible hiding from the medical team.Obviously for him to come home I need a lot of things in place which I am still working on but he was so much happier when the girls were here, he was to weak to join in but just watching them seemed to make him happier. So for now I'm trying to persuade everyone in sight that I am capable and that I have enough of a support network around me when we get back home and bullying people into doing the practical things like nurses to take the samples at home, doctors to review us at home and people to run around about for us for prescriptions and dropping of samples etc. Oliver's main surgeon knows us well and is supporting us all the way so as the head of the ward we stand a good chance. We are also trying to get Oliver off anything that he can not have at home so sedation and pain killers that needs to go through his IV (we can have low risk IVs at home through his port a cath). If it does all fail and he doesn't improve or in fact gets worse obviously we are prepared for this also and bring him straight back in but I truly believe that this is the best thing for him and if nothing else I trust myself with his medication more than any nurse and although their will be a lot more work for me at least I can ensure that no errors occur and it will be a nice calm environment free from bickering surgeons!

http://www.caringbridge.org/visit/oliverking