copied from caring bridge 3/7/2010

Saturday, July 3, 2010 10:47 PM, BST
Today has been a day of two halves. Overnight things did not go to well, the leak got a little worse which caused Oliver quite a lot of pain, when Oliver is in pain he does not really understand and so to try and get rid of it he hurts himself. Therefore he was thrashing about quite a lot and trying to tear his tubes out when he gets like this all that we can do is try and reassure him which is not easy as he needs everything signing and in this state he does not look at what peoples hands are doing and hold him down. My preferred method for this is cuddling him like a bear so he cannot hurt himself this does however mean that instead he hurts me which is preferable to hurting himself. At the times that he was asleep he spent most of the night either lowering his SATs (oxygen levels) to the high 70s (they are meant to be above 95) or having apnea's. Oliver's apnea's also do not self correct so every time he stops breathing it is a matter of giving him a poke to remind him that he needs to breathe. It wasn't a good night for sleep!This morning when we had to use his jejunostomy for his heart medication which can not be put into his IV he leaked a lot more and so we had to give him a lot of extra painkillers this did result in him managing to get some sleep though which is the main thing. After waking Oliver was settled and managed to sit in the pram in the play room for a little while whilst his sisters played, we also managed to sneak him down to the canteen for a little while in an effort to get him off the ward. In reality the healthiest place for him is in bed however this is no life for a small child and as soon as he is well enough we will be sneaking him off the ward to feed the ducks and do anything else that he wants adjusting everything so that the risks are minimised. Oliver has fought so hard and defied all of the odds to stay with us and I truly believe that is because he is because he is incredibly stubborn and because he wants to be here, therefore we need to keep giving him reasons to want to be here. Since having our mini adventure to the play room and the canteen with various pieces of machinery attached Oliver has been happier and has made efforts to move on his own (only his arms and legs but this is a vast improvement) and he has also made progress with sitting up although he is still struggling with his energy and balancing the fact that he is willing to give it a go is a huge step forward. Since our outing Oliver has also been signing and little bits of stubbornness are shining through - this afternoon he refused to wear a top so and so he is currently sleeping soundly next to me in just his roary the racing car pj bottoms. As predicted we did have trouble getting any blood for the required tests, they tried to get it from the port and re needled the port 4 times. What this means is they remove an needle from the metal plate above his heart and put another one in. It is an uncomfortable experience and I'm sure it is also painful however he just lies there and lets them do it just watching. This still did not work and they could not get any blood so they needed to look for veins. This is normally a very stressful experience due to the condition of his veins but we were very lucky and got an experienced surgeon who took her time and got the blood although very slowly which any other child would not of put up with and meant his did not have to be stabbed repeatedly. We are still awaiting the results but I am positive that it is nothing to serious although I am expecting his potassium and HB levels which are normally low to have dropped further.The plan with the leak is wait until Monday and replace the tubes and see if that is the cause. This means that he is not being fed until then so he is likely to get weaker as he has not had any kind of nutrition since wednesday! TPN is being mentioned as a back up plan so fingers crossed that a broken tube is the problem. Oliver is now sleeping (still with no shirt!) with a heart and oxygen saturation level normal for him - our mini adventure had definitely helped lift his spirits!

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