copied from caring bridge 1/7/2010

Thursday, July 1, 2010 11:44 PM, BST
Today has been a long day!Overnight Oliver decided that he would get up at just past midnight and want to play, we both managed to get a little sleep but by 5 this morning he had decided that it was time to go to the play room (we managed to make such a mess that the ward that boasts its play room is always open had to close it because he had coloured on the floor) but we did manage to have a nice cuddle in bed and watch Roary the Racing Car and Thomas.After seeing a rather confused registrar we saw our surgeon who is fab regarding what the plan actually was and he gave us the option of what we wanted doing. It is always a little scary having complete control over what operation Oliver does (or does not) have however we have put alot of thought into this, researched it in depth and spoke to everyone in his team about it and the implications it will have in each area. We therefore went for the original plan.We took Oliver down to theatre a little after 8 and because we know everyone in theatres well both myself and Paul were allowed to accompany him until he was completly under. Oliver was a little superstar who went down laughing and singing waving at everyone. Some people may think that he was naive about what was happening however this is not the case. Oliver is very aware of his medical conditions and will let you access his port a cath without even a whimper, let the cardiologists do an echo and be careful not to move, let the nurses stab him repeatedly for bloods and today when the doctor wanted to listen to his chest he insisted on telling the doctor where she needed to listen turning around and undressing so that she could do so and after she had finished he asked to have the stethoscope and had a listen himself. The anesthetist knows Oliver well having worked with us a couple of times in the past and he let both myself and Paul stay whilst he put him out and so Oliver went to sleep lying in Paul's arms with myself holding his hand and singing to him. The surgery itself went well, they had to abandon the idea of doing anything above the diaphragm so his heart and stomach are still connected however this is not a major problem. With his stomach they were able to enter his abdoment through the same surgical wound that they have used before I have yet to see the wound as it is under dressings however this shouldmean that he won't have to have an additional scar or the scar tissue that goes along with it. The original gastrostomy has been removed and the hole sealed and the gastrostomy has been put back in about an inch lower this is because there was to much damage at the original site to repair it and so the idea it to start again. The stomach itself is now permanently attached to his abdominal wall meaning that we will not have the problem in the future of not knowing where it is and having to such for it. In people with a "normal" anatomy the stomach normally fixes itself in place within days of birth however due to the connection with the heart Oliver's never did and instead had a tendency to float about and never be where it should have been. The were able to have a proper look and get his intestines out to assess how much damage has been caused by the leak and we have been really lucky, his intestines have melted a little with the acid leak and are covered in adhesion's which may or may not cause problems in the future however whilst they are not and there are no fistulas (where the intestines fuse together) present we are leaving them alone as treatment can be worse than the adhesion's themself. They have also put the jejunostomy back in place as a back up in case the operation has not worked we will still be able to feed him enterally straight into the intestine.Whilst he was in theatre however there were some complications with his breathing (to the point where we were called to return to the hospital as we had opted to take a walk.) The problem arose because his lungs are considered brittle due to so much time ventilated, and having spent so long with pulmonary hypertension. They had to switch him from a normal mechanical ventilator (a machine that breathes for him) to an oscillator ventilator to try and reduce the risk of further damage, he also required full oxygen support but they still could not get his SATs (oxygen levels to rise.) However they did not drop remarkably low and so there should be no long term effects however it has lead to yet another anethesist saying that he would not be prepared to operate on Oliver again.When they had finished the operation and came to waking him up/ getting him off the antestic Oliver had other ideas and exhubated himself (pulled the breathing tube out.) This has got rid of any ideas that anyone ever had about him resting and keeping him in a drug induced coma so his body could heal. After coming around from the surgery at about 2 ish I was able to meet Oliver in recovery still needing a lot of oxygen support he was breathing for himself and fighting the oxygen mask, over the course of the evening we have been able to wean him from 15 litres of oxygen per minute to 2 which is excellent however his heart rate is still on the high side (160 at rest rising to 190 ish when awake.) Oliver is very drowsy and on a lot of pain relief however he is experiencing a lot of pain which he does not understand. We are unable to lift him to comfort him and so can only hold his hand and head to comfort him as such he will sleep for a few minutes and then whimper, cry and scream for a few more before he drifts back to sleep -hence why this update has taken so long to write. The gastrostomy itself appears to have started leaking again intermittently although we will know more tomorrow. All in all though he is doing very well, because he is breathing for himself he is back on the ward which is amazing to have avoided intensive care and should have cut down the length of time he will have to stay in.One thing that has become clear is that he will not be having a full repair of his oesophageal atresia (otherwise known as the big op.) Oliver's intestines have to many adhesion'sand he would never cope with the length of time that he would have to be in theatre (combined with the fact the no anesthetist is likely to agree to try it!.) There is currently only one other child known to have not had a repair and still be alive and she is a little figther over a year younger than Oliver and is part way through the repair as due to complications it has needed to be done in stages. However the negatives to this op outweigh the benefits for Oliver and so we will be remaining unrepaired at least for the foreseeable future.Thanks for all your support and messages xxx

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