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
Saturday, 3 July 2010
caring bridge 2/7/2010
Friday, July 2, 2010 11:06 PM, BST
Well we have had a settled day today. After the excitement of having a room crowded with doctors and surgeons with me still in my pyjamas the day has definitely improved! Oliver has been very settled and his heart rate although a little high (120 at rest where it is normally around 80 and 150-160 when awake when it is normally around 90) although still on the high side it is not causing any concerns and should reduce naturally, oxygen wise he is also doing fabulously back down to his usual 0.2 litres although we are trying to keep him on it day and night rather than just whilst he sleeps due to a high carbon dioxide level in his blood. We have however managed to acquire a non blanching rash which hopefully is nothing serious although as soon as they can get him to bleed since he has decided that he does not want a blood test doing and will not relinquish any of it. This is not a problem at the moment as they are trying to get it out of his port a cath every time the line is broken for his medicines or to change bags of fluid. However if he does not give them some soon then they will have to start looking for veins to do a normal blood test. For Oliver this is a very traumatic experience as his veins are severely scarred by the number of blood tests and cannulas he has had to have and so it is extremely painful for his and normally requires double figure attempts before they find a vein in little fingers or toes that is prepared to bleed. When they have got the blood they will be testing for sepsis however although he is warm he does not have a temperature which is a good indication that he does not have this complication. Last time he did have sepsis he developed endocarditis and we almost lost him due to a prolonged cardiac arrest, we were lucky then that he only lost his hearing as a result this time we are taking extra precautions.All of Olivers medicines are either being given IV now or have been stopped so that his gastrostomy and jejunostomy can heal. There are a couple of things that can be causing the gastrostomy to leak;a) the tube is broken - this is our best option and the one we are hoping for, they cannot replace the tube at the moment for fear of tearing his internal stitches but this is the easiest one to sort outb) there is an obstruction - one of the complications of his surgery is that the intestines become damaged and obstructed this is not a good option, this will require more surgery which we have not got an anesthist prepared to undertake due to the risks involved.c) that it is the original leak still leaking - this is also not a good option as it means he will continue to lose weight and need to go onto TPN (total parental nutrition.) If we need to go onto this he will need to stabilise in order to be allowed home and is likely to only be allowed home for a few hours at a time for the first few months (this is what it has been in the past.) Oliver has never stabilised on TPN despite having been on it numerous times. Instead of stabilising every time Oliver has gone into liver failure and the last time had to have emergency surgery as a result. It is the combination of liver failure and TPN which has caused us to lose many of his little friends.On a more positive not Oliver has been a lot happier in himself, although drained, sleepy and irritable to the point whereby he is struggling to lift his head and cannot sit up we have managed to have cuddles and kisses, he has enjoyed having us sing "this little piggy" on his toes and has watched Toy Story (with lots of naps.) Today we have also managed to borrow some sensory equipment including a light tube and tails which he loved and tried to reach out for, he also enjoyed watching Paul and I dancing around like fools to a Disney soundtrack much to the amusement of the rest of the ward. Hopefully this means that his pain medication is working effectively and The girls have also had a great day paddling, going to the park and meeting with friends (Grandma is all bruised an Millie keeps telling me how they splashed her.) I can not wait till tomorrow when I will finally see my girls we have lots of exciting things planned both with and without Oliver as although our family life has to run around his health Amelia and Imogen are also our babies that need time to know that they are loved and belong just as much as Oliver. Hopefully today is just a day of minor setbacks which will turn out to be fine, in the scheme of things by the original plan Oliver should still be in a drug induced coma and in intensive care. If this was the case I would be unable to see my girls until he was back on the ward as it is he is still doing amazingly well and so that is what we will concentrate on.
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Friday, July 2, 2010 9:16 AM, BST
Just a quick update whilst Oliver is asleep he didn't have the best night and has been in quite a bit of pain so this morning they have decided to increase his pain medication to try and keep him asleep. Hopefully this will make him more comfortable. Olivers gastrostomy/jejunostomy has started to leak what is put in it (only his medicines at present as he has not been fed since the operation to let his gut rest) so they are transfering everything possible to IV and run straight through the port a cath into his heart as they are worried about tearing his internal stitches. Hopefully this will only be a minor set back
http://www.caringbridge.org/visit/oliverking
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
http://www.caringbridge.org/visit/oliverking
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
http://www.caringbridge.org/visit/oliverking
copied from caring bridge 30/6/2010
Wednesday, June 30, 2010 10:42 PM, BST
We were admitted today in order for Oliver to have his pre op and to ensure everything was in place so it was an early start (have you ever tried to get three small children up dressed and ready to leave the house before 7am - today we managed it and to get one load of washing done and on the line and another in the machine.) The girls were dropped at my mother in laws and by all accounts have had a great day buying and cooking tea for daddy, picking flowers, playing at the water park and generally destroying Grandmas house with all of there toys.Oliver has also had a really good day, after the excitement of going on the train and doing sticker books all the way he went shopping (and said I looked pretty in some new bits I tried on which was a great confidence boost) and picked out lots of new toys for him and his sisters. On arriving at the hospital he has managed to move half of the play room into his bed and has been crawling up and down the corridors in a Snow White outfit much to the amusement of the staff and I think we have finally mastered the art of drawing circles. We have had a few wobbles due to no one seeming to know what operation he is actually having tomorrow so I am not consenting to anything until I have seen the main surgeon, and a lovey doctor who seemed a little overwhelmed by Olivier's conditions who decided that he was to sick for surgery - he is however the healthiest he has ever been and two other doctors as well as his cardiologist have decided that now is our best shot. From a personal point of view we have never had to send him to theatre being this well.All bloods etc are done and so we are awaiting the results in the morning but as he is asleep in his cot next to me he looks so small and skinny it is apparent just how badly he needs this operation and to get some decent nutrition. When you see Oliver is he obviously skinny, when you see him naked he is pitifully thin but when you see him lying at eye height every rib is visible even through his pyjamas, his port a cath protrudes to the point that the needle is now to long and needs padding and as gravity draws his stomach in he looks really sick, not helped by the oxygen and SATs monitor and his other equipment.I think I have decided that elective surgery is harder than emergency surgery. In an emergency you can get whisked away with tasks and by concentrating on each small task you do not have to think about the fact that soon you will be handing him over and praying that they will take care of him. With an elective surgery everything is planned, there is nothing to take your mind off of the surgery and the risks and so you think about it more and the more you think about it the harder it is going to be to hand him over. It is a dreadful feeling having to put his life completely in someone elses hands and knowing that their just is no other option. Thank you for all your thougts and your prayers Michelle
http://www.caringbridge.org/visit/oliverking
We were admitted today in order for Oliver to have his pre op and to ensure everything was in place so it was an early start (have you ever tried to get three small children up dressed and ready to leave the house before 7am - today we managed it and to get one load of washing done and on the line and another in the machine.) The girls were dropped at my mother in laws and by all accounts have had a great day buying and cooking tea for daddy, picking flowers, playing at the water park and generally destroying Grandmas house with all of there toys.Oliver has also had a really good day, after the excitement of going on the train and doing sticker books all the way he went shopping (and said I looked pretty in some new bits I tried on which was a great confidence boost) and picked out lots of new toys for him and his sisters. On arriving at the hospital he has managed to move half of the play room into his bed and has been crawling up and down the corridors in a Snow White outfit much to the amusement of the staff and I think we have finally mastered the art of drawing circles. We have had a few wobbles due to no one seeming to know what operation he is actually having tomorrow so I am not consenting to anything until I have seen the main surgeon, and a lovey doctor who seemed a little overwhelmed by Olivier's conditions who decided that he was to sick for surgery - he is however the healthiest he has ever been and two other doctors as well as his cardiologist have decided that now is our best shot. From a personal point of view we have never had to send him to theatre being this well.All bloods etc are done and so we are awaiting the results in the morning but as he is asleep in his cot next to me he looks so small and skinny it is apparent just how badly he needs this operation and to get some decent nutrition. When you see Oliver is he obviously skinny, when you see him naked he is pitifully thin but when you see him lying at eye height every rib is visible even through his pyjamas, his port a cath protrudes to the point that the needle is now to long and needs padding and as gravity draws his stomach in he looks really sick, not helped by the oxygen and SATs monitor and his other equipment.I think I have decided that elective surgery is harder than emergency surgery. In an emergency you can get whisked away with tasks and by concentrating on each small task you do not have to think about the fact that soon you will be handing him over and praying that they will take care of him. With an elective surgery everything is planned, there is nothing to take your mind off of the surgery and the risks and so you think about it more and the more you think about it the harder it is going to be to hand him over. It is a dreadful feeling having to put his life completely in someone elses hands and knowing that their just is no other option. Thank you for all your thougts and your prayers Michelle
http://www.caringbridge.org/visit/oliverking
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!
http://www.caringbridge.org/visit/oliverking
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!
http://www.caringbridge.org/visit/oliverking
Copied from Caring Brigde 12/6/2010
Saturday, June 12, 2010 11:48 PM, BST
I have always regretted not setting this up when Oliver was born and so I have done so now in order to keep in contact with you all whilst Oliver undergoes operation number 11 in July.Please make sure you tick to recieve the journal updates so that you recieve them whilst we are in hospital.
http://www.caringbridge.org/visit/oliverking/
I have always regretted not setting this up when Oliver was born and so I have done so now in order to keep in contact with you all whilst Oliver undergoes operation number 11 in July.Please make sure you tick to recieve the journal updates so that you recieve them whilst we are in hospital.
http://www.caringbridge.org/visit/oliverking/
Saturday, 17 April 2010
Wow its april!
Well the title says everything! I have never managed to keep a dairy so the fact that 4 months have passed since I last wrote anything should come as no surprise yet I feel disappointed in myself.
Today has been a great day spent enjoying the sunshine playing in the garden. The guinea pigs (Peppa and George) which we have only had for 48 hours are already looking fatter for all of the vegetables and grass that Oliver and Amelia are feeding them!
Today was also a productive day with us finally managing to get everything sorted in our mini greenhouse. We now have re-potted tomatoes, beetroot, cabbage, cauliflowers, strawberries, peppers, chillies, peas, various salad leaves and everything else is starting to grow or is at least planted. One of these days I will get myself organised - out of all the things to forget I forgot the pots to plant, and re-pot everything in. Instead I find myself raiding the recycling bin to pull out milk bottles, toilet role middles and even easter egg boxes to replant items in. To the kids I am a mad woman but for now at least I will tell everyone that it was meant to be that way in order to cut down on waste etc.
On the plus side our herb garden out of a shoe rack looks great!
Today has been a great day spent enjoying the sunshine playing in the garden. The guinea pigs (Peppa and George) which we have only had for 48 hours are already looking fatter for all of the vegetables and grass that Oliver and Amelia are feeding them!
Today was also a productive day with us finally managing to get everything sorted in our mini greenhouse. We now have re-potted tomatoes, beetroot, cabbage, cauliflowers, strawberries, peppers, chillies, peas, various salad leaves and everything else is starting to grow or is at least planted. One of these days I will get myself organised - out of all the things to forget I forgot the pots to plant, and re-pot everything in. Instead I find myself raiding the recycling bin to pull out milk bottles, toilet role middles and even easter egg boxes to replant items in. To the kids I am a mad woman but for now at least I will tell everyone that it was meant to be that way in order to cut down on waste etc.
On the plus side our herb garden out of a shoe rack looks great!
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