Copied from Caring Bridge 24/6/2010

Thursday, June 24, 2010 6:15 PM, BST
THE PLAN!!!As quite a few people have signed up to get updates regarding Oliver's health I thought I had better write something! Therefore I thought I would let you know about the plan for next week. Oliver will be going in to Leicester Royal Infirmary on Wednesday for his pre op, bloods and consenting etc and early on thursday morning he will be making his eleventh journey to theatre for serious surgery (we have lost count of how many minor operations he has had.) Whilst he is under our wonderful surgeon Mr Fisher who is the only person who truly understands Oliver's internal organs and what is missing, and what is in the wrong place will perform his magic.The plan is that Olivers stomach will be disconnected from heart and put back underneath his diagprahm and will be connected permantly to his abdomanial wall. This will stop the floating affect we currently have which sees his stomach move. Whilst they are operating on his stomach they will stem any leaks for the site where it is to be disconnected from his heart and try and stop his other leaks. It is these leaks which causes the stomach acid to burn his skin and causes him pain. Luckily he has not needed regular morphine for this since we managed to reduce the acidity of his stomach acid however he still has episodes of self harming due to pain relating to his stomach.They will also attempt to repair his intestines. At a previous visit we were told that his intestines have "melted and fused together" due to the prolonged acid leakage this means when we put milk into his gastrostomy that it is still milk when it exits the other end as instead of traveling through his intestines and being absorbed it travels through the sites (fistulas) where the intestines have melted together. Until he is in theater it is impossible to access how much damage has been done to his intestines, how long it will take or even if it is repairable. From seeing his intestines they will also be able to see if there is a section large enough and healthy enough for the proposed transplant to replace his absent oesophagus sometime in the future. They are also looking at doing some investigation work on his liver and taking a biopsy as they are still unsure what has caused all of his prolonged liver complications although hopefully it is just glandular fever which he is now testing positive. Hopefully it is nothing more serious as it is his liver complications which are thought to have caused the Transient Ischaemic Attack (mini stroke) back in february.They are unable to advise us how long he will be in theatre but we are the only people on Mr Fishers list for the day as he is expecting Oliver to take a full day.After the surgery Oliver will need time to rest and so they will place him in a drug induced coma, this will allow his body to totally rest and heal whilst machinery takes care of everything else including breathing At present Oliver is healthy and so this is the best time for this large operation however as you already know medically he is very fragile with a complex history however we have no choice in his having this operation and as much as we want to protect our little man with out this operation Oliver will waste away. 18 months ago he weighed 11 kilos, he now barely weighs 9 - to put this in perspective his 10 month old sister Imogen now weighs more than him, although he is the height of a shortish3 year old. Oliver is literally wasting away before our eyes and is more painfully thin to the point his spine sticks into my wrist when I hold him on my hip. If this operation does not get him to be able to absorb more nutrients from his milk we are looking at long term TPN (IV feeds). In the past when he has been on this he has never stabilised and his liver has gone into failure, without stabilising he would not be allowed to leave the hospital. Unfortunately there no other option if his operation is not a success, we have already tried to increase his milk allowance and this causing his lungs to overload with fluid and heart to develop more problems and we cannot concentrate his feed to allow his to be given more calories as then he can not absorb it and it causes him a lot of pain and this is then worse as he self harms and becomes dehydrated as a result. Obviously it is a worrying time for us however we remain positive by this time next week hopefully we will be out of theatre and know more about what the future will hold for our little man and he will be able to rest and get well and be able to prepare to absorb lots more nutrients from his milk and get positively chubby!

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