Sunday, July 11, 2010 12:59 AM, BST
I have good news!!!!We brought Oliver (and the girls) home late last night and as we were leaving the hospital Oliver was waving to the building (I don't think he really believed we were going home till he saw the car) cheering and spent the journey home dancing even though it was past his bed time.There are many reasons why he is back at home the main one being how miserable he was there. Oliver always has a smile for anyone but all he was doing is whimpering if we cannot inspire the will to fight in him then we have already lost. Chicken pox also broke out on our ward which just isnt an option for him to catch.Before leaving we managed to re introduce feeds however even now over 24 hours late he still is only on 3/4 feeds and in this heat we are concerned about him dehydrating but we are monitoring him closely. These feeds are going into his jejunostomy where they were going before this operation and using his gastrostomy is not an option therefore feeding wise we are in the same place before the operation just we now have additional complications. When we introduced these feeds Oliver's stomach became very distended and the milk appeared to be backing up the intestines and into the stomach, it is therefore likely that he has some kind of obstruction but we are hoping that it will clear on his own and are massaging the area a lot to try and encourage milk to pass and so far it seems to be working.When we got home nicely waiting on the mat was a letter for our GP - this letter is telling him to take extra precautions when seeing Oliver because he now has MRSA!!! This letter was dated for 5 days ago and so this small infection that we weren't to worry about in his surgical incision (which is still bleeding and oozing green fluid) is actually highly infectious and potentially fatal in someone with Olivers history especially as it is in his blood stream. The fact they have known about it for 5 days and played it down is disgusting and since going home infection control and the ward have been unable to speak to me on the phone, have not returned my calls and have hung up on me when I have asked to speak to people about this!We spoke to the surgeon re moving forward and he is looking into other facilities for us as he has no other ideas on how to improve Oliver's situation apparently I should have a plan by Tuesday - we will have to wait and see if they answer my calls then.On the plus side since returning home Oliver has been happy and giggling, has started crawling and pulling himself to standing again. Just being home and with his family is having such a positive effect on him that he is a changed child.We have definitely made the right decision.
http://www.caringbridge.org/visit/oliverking
Saturday 10 July 2010
Thursday 8 July 2010
copied from caring bridge 8th july 2010
Thursday, July 8, 2010 10:41 PM, BST
I wish I had to some good news to share unfortunately at present everything is quite negative i know how hard it is to write and it must be just as depressing to read.Today Amelia and Imogen came to visit and although neither were happy about being confined to a small room but is was great to be able to see them and hold them and as soon as he saw them Oliver started smiling and waving to them. It made his day.Oliver's HB levels dropped to 7.0 this morning (they are meant to be between 11 and 15) and so today he has had a blood transfusion which means he is looking a lot pinker and is feeling less tired. All the episodes does seem to be dehydrating him a bit and so any extra fluid is gratefully received! When cleaning OLivers surgical sites this morning there it is very swollen, red with a green discharge, we are unsure if acid from the leaking gastrostomy has got into it but it is likely that there is another infection here also. We have started some antibiotics for this as we can not afford for it to become any worse however this is likely to make the c diff worse but without it he will get sepsis.Oliver's gastrostomy has also restarted leaking today- I wish I could say it is a little trickle but that is not the case. When ever Oliver moves everything in his stomach empties itself through the stoma, this means he is unable to have his enteral medicines again and we have had to stop all feeds. We have just started some clear fluids through his port a cath however this is risky as if the staph infection is in his port then it will push it around his bloodstream and make the infection worse however without it he would dehydrate with out.Tomorrow I am meeting with the head surgeon (no more tweedle dee and tweedle dum) to try and come up with a plan but it looks like we will be getting a second opinion the only problem is where from. We cannot go on like this our situation is becoming desperate but at the same time we have already had numerous second opinions and no one else has a plan to improve our situation so if anyone knows of any hospitals with good paediatric gastroenterology and nutrition facilities I would be very grateful as I am currently emailing various units with brief details if any are interested in hearing more / think they may be able to help we will be faxing Oliver's notes across (bearing in mind he has over 20 of the large hospital note folders!)Thanks for bearing with us and all of your messages of support we are truly thankful for them, and I'm sure Oliver will be to when he is old enough to read and appreaciate how many people are care about him. Through out everything he has been so brave and maintained his smile he really wants to be here but if you do know of anywhere we really need to hear from you.
http://www.caringbridge.org/visit/oliverking
I wish I had to some good news to share unfortunately at present everything is quite negative i know how hard it is to write and it must be just as depressing to read.Today Amelia and Imogen came to visit and although neither were happy about being confined to a small room but is was great to be able to see them and hold them and as soon as he saw them Oliver started smiling and waving to them. It made his day.Oliver's HB levels dropped to 7.0 this morning (they are meant to be between 11 and 15) and so today he has had a blood transfusion which means he is looking a lot pinker and is feeling less tired. All the episodes does seem to be dehydrating him a bit and so any extra fluid is gratefully received! When cleaning OLivers surgical sites this morning there it is very swollen, red with a green discharge, we are unsure if acid from the leaking gastrostomy has got into it but it is likely that there is another infection here also. We have started some antibiotics for this as we can not afford for it to become any worse however this is likely to make the c diff worse but without it he will get sepsis.Oliver's gastrostomy has also restarted leaking today- I wish I could say it is a little trickle but that is not the case. When ever Oliver moves everything in his stomach empties itself through the stoma, this means he is unable to have his enteral medicines again and we have had to stop all feeds. We have just started some clear fluids through his port a cath however this is risky as if the staph infection is in his port then it will push it around his bloodstream and make the infection worse however without it he would dehydrate with out.Tomorrow I am meeting with the head surgeon (no more tweedle dee and tweedle dum) to try and come up with a plan but it looks like we will be getting a second opinion the only problem is where from. We cannot go on like this our situation is becoming desperate but at the same time we have already had numerous second opinions and no one else has a plan to improve our situation so if anyone knows of any hospitals with good paediatric gastroenterology and nutrition facilities I would be very grateful as I am currently emailing various units with brief details if any are interested in hearing more / think they may be able to help we will be faxing Oliver's notes across (bearing in mind he has over 20 of the large hospital note folders!)Thanks for bearing with us and all of your messages of support we are truly thankful for them, and I'm sure Oliver will be to when he is old enough to read and appreaciate how many people are care about him. Through out everything he has been so brave and maintained his smile he really wants to be here but if you do know of anywhere we really need to hear from you.
http://www.caringbridge.org/visit/oliverking
Wednesday 7 July 2010
caring bridge 8/7/2010
Thursday, July 8, 2010 12:17 AM, BST
Just a quick update tonight as I need my bed and it is already stupid o clock. Oliver had a great morning (I did not due to a c diff episode in MY bed - which he found amusing!) and we thought we would be able to get everything in place to discharge him however he has developed a Staphylococcal Infection hopefully this won't delay our plans by to much however this is the same bug as meningitis and so we are not taking any risks until we know all of the details. At present they do not know where the infection is, hopefully it isn't in the port a cath or his blood stream either way it cannot be treated whilst he has c diff. At the moment it does not seem to be affecting him to much except that his HB levels have dropped to 7 - we are getting closer and closer to transfusion level but that is not a major disaster and we are back on Sytron now which will help maintain his levels in the future. We are also back on full feeds with no maintenance fluids!!! - They are going in very slowly over 24 hours however the main thing is they are going in and the leak appears to be reducing.Oliver has been so good today that I managed to take him out of the hospital briefly to buy some new clothes (essential due to the c diff and being stranded without a washing machine) and some bubbles which were essential. When we got back to the ward we were enjoying a cuddle when all of a sudden he sat up looked confused and asked for his bubbles and so we have had a lot of fun popping them and daddy was able to come and see us this evening - tomorrow we have the girls and are planning to try and escape again as i have heard a rumour about a park and ducks.....
http://www.caringbridge.org/visit/oliverking/
Just a quick update tonight as I need my bed and it is already stupid o clock. Oliver had a great morning (I did not due to a c diff episode in MY bed - which he found amusing!) and we thought we would be able to get everything in place to discharge him however he has developed a Staphylococcal Infection hopefully this won't delay our plans by to much however this is the same bug as meningitis and so we are not taking any risks until we know all of the details. At present they do not know where the infection is, hopefully it isn't in the port a cath or his blood stream either way it cannot be treated whilst he has c diff. At the moment it does not seem to be affecting him to much except that his HB levels have dropped to 7 - we are getting closer and closer to transfusion level but that is not a major disaster and we are back on Sytron now which will help maintain his levels in the future. We are also back on full feeds with no maintenance fluids!!! - They are going in very slowly over 24 hours however the main thing is they are going in and the leak appears to be reducing.Oliver has been so good today that I managed to take him out of the hospital briefly to buy some new clothes (essential due to the c diff and being stranded without a washing machine) and some bubbles which were essential. When we got back to the ward we were enjoying a cuddle when all of a sudden he sat up looked confused and asked for his bubbles and so we have had a lot of fun popping them and daddy was able to come and see us this evening - tomorrow we have the girls and are planning to try and escape again as i have heard a rumour about a park and ducks.....
http://www.caringbridge.org/visit/oliverking/
Tuesday 6 July 2010
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
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
Monday 5 July 2010
copied from caring bridge 5/7/2010
Monday, July 5, 2010 10:57 PM, BST
I'm not to sure how I am feeling about today, some parts have be excellent, others terrible and some darn right amusing which makes me feel like the NHS is run by the makers of the Benny Hill sketch showsWe are also now on complete isolation and cannot even use the parents shower or kitchen for fear that we will pass on Olivers c diff so unless they come up with a suggestion by the morning I will be stinky! This also makes things harder around visitors as they can see us so long as they wear gloves and gowns - I was hoping to see the girls tomorrow and I am unsure of how this is going to work with them especially as Millie has taken quite a liking to the playroom but our visitors are not allowed to see anyone else in the hospital let alone be allowed in to the playroom.The Good - Oliver had a miserable couple of hours this morning asking to go home, and to see his sisters I was quite excited that he was finally signing and asking for things which he hasn't done since the surgery yet it is thoroughly heart breaking to to be able to do as he wants. Instead we built a play tent out of sheets and agreed that no one would touch him or do any medical procedures whilst he was in it- this did lead to him abusing the tent and hiding in it when he really should of been having blood tests but I did manage to coax him out in the end and we stuck to the no medical procedures in the tent rule which cheered him up no end. We have also been working on the laptop today, he has been downloading all the latest episodes of Something Special and Third and Bird and we have been doing silly dances but he has also discovered the magic of games on the laptop which I'm sure I will regret when he asks for the latest play station. Oliver isn't to sure of the build in mouse yet he knows that it does something important and decided to fight me for it earlier but he can press the buttons his favourite though are games that you press any key on the key pad and something happens and so we have been learning colours, shapes, alphabet, singing songs with the computer and loads more besides.The bad - Oliver's blood tests from earlier today are worrying. For my medically minded friends his CRP has risen to 129 meaning his infection is getting worse (levels are meant to be under 10,) his HB (hemoglobin is what carries oxygen in the blood around his body) has dropped in the last 24 hours from 10.1 to 8.6, this is concerning as normal for a child is between 11 and 13 and so they are starting to talk about transfusions, his levels will be retested when they break his IV line at 6 am as it is easier to run a transfusion through the day and it would need ordering etc. Olivers Potassium levels are also causing alot of concerns, Potassium levels are meant to run between 3.5 and 5. When we were admitted we had a normal 4.7, by saturday they had fallen to 3.6 and we started adding supplements into his IV bag, this morning they were down to 3.1 and the supplements were increased and tonight it has dropped again to 2.6. If they drop below 2.5 he will be classified as having hypokalemia which causes heart irregularities and is life threatening, they have an intensive care bed on standby and have increased the supplements further. Oliver has managed to start having some enteral feeds today, and since 6pm has had 10 mls per hour (think 2 child size medicine spoons) this may not sound like a lot but he has been completely starved and only allowed water and glucose IV bags since the Wednesday night. Although he does have a small leak it is just small but his stomach appears to have started bleeding which we will need to keep an eye on as last time he had c diff it developed into colitis. The C Diff is also quite apparent now, I won't tell you the details but anyone with any experience with C Diff you know what I mean!The Ugly - (or comical if its not your son stuck in the middle!) Oliver was meant to be having his gastrostomy tube changed today however a surgical registrar came in a told us that this plan had changed and not we were going to recommence feeds at a slow rate and see what happened. Providing it was at a very slow rate this idea wasn't unacceptable to us and if anything made sense to retest it and just see if it had been a post surgery leak. Before we could start the feed another registrar came in saying no we could not restart feeds and that he needed to have a small operation to change the tube however it was to late in the day and so they would do it tomorrow. This was a little unacceptable as he cannot have an anesthetic and so I would be required to pin him down for it but I did ask about the others registrars suggestion and so he decided he would make some phone calls and get back to me. A short while later both registrars came back in together having obviously had a heated conversation this in itself was a little amusing and I couldn't help but smile thinking all would be fine as I would just demand to see our surgeon and there boss before either option was tried. It would appear that smiling to oneself whilst 2 surgeons are angry with each other does not help this delicate situation and they started moaning at each other with raised voices to try and establish who was right. To tell you how loud these raised voices were Oliver could hear them even with his severe hearing loss! In the middle of this I received a phone call which normally I would of just cut off had I not realised that it was our surgeons private mobile. Our surgeon (their boss) was less than complimentary about both of them and basically told me to ignore them both! Between us we decided to start on very small amounts of feed and see how it goes with the option of replacing the tube if necessary part way through this conversation both of the registrars wandered off in a huff maybe because I was being rude and ignoring them or maybe because I answered the phone very efficiently announcing who was calling either way I haven't seen either since! I must say it doesn't inspire confidence in the system.
http://www.caringbridge.org/visit/oliverking
I'm not to sure how I am feeling about today, some parts have be excellent, others terrible and some darn right amusing which makes me feel like the NHS is run by the makers of the Benny Hill sketch showsWe are also now on complete isolation and cannot even use the parents shower or kitchen for fear that we will pass on Olivers c diff so unless they come up with a suggestion by the morning I will be stinky! This also makes things harder around visitors as they can see us so long as they wear gloves and gowns - I was hoping to see the girls tomorrow and I am unsure of how this is going to work with them especially as Millie has taken quite a liking to the playroom but our visitors are not allowed to see anyone else in the hospital let alone be allowed in to the playroom.The Good - Oliver had a miserable couple of hours this morning asking to go home, and to see his sisters I was quite excited that he was finally signing and asking for things which he hasn't done since the surgery yet it is thoroughly heart breaking to to be able to do as he wants. Instead we built a play tent out of sheets and agreed that no one would touch him or do any medical procedures whilst he was in it- this did lead to him abusing the tent and hiding in it when he really should of been having blood tests but I did manage to coax him out in the end and we stuck to the no medical procedures in the tent rule which cheered him up no end. We have also been working on the laptop today, he has been downloading all the latest episodes of Something Special and Third and Bird and we have been doing silly dances but he has also discovered the magic of games on the laptop which I'm sure I will regret when he asks for the latest play station. Oliver isn't to sure of the build in mouse yet he knows that it does something important and decided to fight me for it earlier but he can press the buttons his favourite though are games that you press any key on the key pad and something happens and so we have been learning colours, shapes, alphabet, singing songs with the computer and loads more besides.The bad - Oliver's blood tests from earlier today are worrying. For my medically minded friends his CRP has risen to 129 meaning his infection is getting worse (levels are meant to be under 10,) his HB (hemoglobin is what carries oxygen in the blood around his body) has dropped in the last 24 hours from 10.1 to 8.6, this is concerning as normal for a child is between 11 and 13 and so they are starting to talk about transfusions, his levels will be retested when they break his IV line at 6 am as it is easier to run a transfusion through the day and it would need ordering etc. Olivers Potassium levels are also causing alot of concerns, Potassium levels are meant to run between 3.5 and 5. When we were admitted we had a normal 4.7, by saturday they had fallen to 3.6 and we started adding supplements into his IV bag, this morning they were down to 3.1 and the supplements were increased and tonight it has dropped again to 2.6. If they drop below 2.5 he will be classified as having hypokalemia which causes heart irregularities and is life threatening, they have an intensive care bed on standby and have increased the supplements further. Oliver has managed to start having some enteral feeds today, and since 6pm has had 10 mls per hour (think 2 child size medicine spoons) this may not sound like a lot but he has been completely starved and only allowed water and glucose IV bags since the Wednesday night. Although he does have a small leak it is just small but his stomach appears to have started bleeding which we will need to keep an eye on as last time he had c diff it developed into colitis. The C Diff is also quite apparent now, I won't tell you the details but anyone with any experience with C Diff you know what I mean!The Ugly - (or comical if its not your son stuck in the middle!) Oliver was meant to be having his gastrostomy tube changed today however a surgical registrar came in a told us that this plan had changed and not we were going to recommence feeds at a slow rate and see what happened. Providing it was at a very slow rate this idea wasn't unacceptable to us and if anything made sense to retest it and just see if it had been a post surgery leak. Before we could start the feed another registrar came in saying no we could not restart feeds and that he needed to have a small operation to change the tube however it was to late in the day and so they would do it tomorrow. This was a little unacceptable as he cannot have an anesthetic and so I would be required to pin him down for it but I did ask about the others registrars suggestion and so he decided he would make some phone calls and get back to me. A short while later both registrars came back in together having obviously had a heated conversation this in itself was a little amusing and I couldn't help but smile thinking all would be fine as I would just demand to see our surgeon and there boss before either option was tried. It would appear that smiling to oneself whilst 2 surgeons are angry with each other does not help this delicate situation and they started moaning at each other with raised voices to try and establish who was right. To tell you how loud these raised voices were Oliver could hear them even with his severe hearing loss! In the middle of this I received a phone call which normally I would of just cut off had I not realised that it was our surgeons private mobile. Our surgeon (their boss) was less than complimentary about both of them and basically told me to ignore them both! Between us we decided to start on very small amounts of feed and see how it goes with the option of replacing the tube if necessary part way through this conversation both of the registrars wandered off in a huff maybe because I was being rude and ignoring them or maybe because I answered the phone very efficiently announcing who was calling either way I haven't seen either since! I must say it doesn't inspire confidence in the system.
http://www.caringbridge.org/visit/oliverking
Sunday 4 July 2010
Feeling Blue
Sometimes it is hard to admit when things are not so good but today is one of those days. We have only been back in hospital for under a week yet it feels like forever and as if we have never been home. Admittedly having spent around thirteen months out of the last three years in hospital that often feels like the case. I guess there are many things that are harder this time for a variety of reasons
a) Oliver is older and understands and just how much he understands is painfully obvious
b) I'm separated from everyone again meaning my whole support network has collapsed most importantly I am away from my girls and every time I think about them and what they are doing (even though I know they are well looked after and enjoying themselves) I just want to cry.
I guess I am just having a self pitying moment but it is not helped by the fact that we have no idea how long we will be in and last time we came in under very similar circumstance we were in for four and a half months.
A big hug from my babies will make me feel better!
a) Oliver is older and understands and just how much he understands is painfully obvious
b) I'm separated from everyone again meaning my whole support network has collapsed most importantly I am away from my girls and every time I think about them and what they are doing (even though I know they are well looked after and enjoying themselves) I just want to cry.
I guess I am just having a self pitying moment but it is not helped by the fact that we have no idea how long we will be in and last time we came in under very similar circumstance we were in for four and a half months.
A big hug from my babies will make me feel better!
Copied from Caring Bridge 4/7/2010
Sunday, July 4, 2010 8:05 PM, BST
We had a good night with only waking for one screaming fit which subsided when he was allowed his next lot of painkillers. The day has been pretty hit and miss with him being very subdued but the it is the weekend so we have managed to be pretty much left alone from medical bits we are having problems every time his painkillers run out but it does subside soon after he has the painkillers.Oliver is now testing positive for C Diff. This is generally a hospital acquired infection however once you have had it once reoccurance is common when on high strength antibiotics (which Oliver is on.) The last time Oliver caught C diff we caught it from a different hospital, it developed into colitis, sepsis, endocarditis and caused a cardiac arrest (as well as 4 1/2 months in hospital.) This time it has been caught early so fingers crossed things will be fine. On the plus side Oliver has just managed to sit up on his own!!! For the first time since the op so he must be feeling better, maybe it is related to another trip to the canteen with Grandad and his sisters or maybe the trip to the roof top play area where he did not want to participate and instead watched - his sisters however loved it and Millie found herself a boyfriend in the canteen!The plan for tomorrow is to see the surgeons and hopefully see if it is the tube that is blocked I will know more in the morning but as far as I am aware they will be removing the current jejunostomy and gastrostomy and replacing the gastrostomy (they can not replace the jejunostomy due to fear of breaking the internal stitches.) If it is not the tube that is broken then we will be in a worse position than what we came in with as we will have no way to feed him enterally and TPN will be our only route forward.
http://www.caringbridge.org/visit/oliverking
We had a good night with only waking for one screaming fit which subsided when he was allowed his next lot of painkillers. The day has been pretty hit and miss with him being very subdued but the it is the weekend so we have managed to be pretty much left alone from medical bits we are having problems every time his painkillers run out but it does subside soon after he has the painkillers.Oliver is now testing positive for C Diff. This is generally a hospital acquired infection however once you have had it once reoccurance is common when on high strength antibiotics (which Oliver is on.) The last time Oliver caught C diff we caught it from a different hospital, it developed into colitis, sepsis, endocarditis and caused a cardiac arrest (as well as 4 1/2 months in hospital.) This time it has been caught early so fingers crossed things will be fine. On the plus side Oliver has just managed to sit up on his own!!! For the first time since the op so he must be feeling better, maybe it is related to another trip to the canteen with Grandad and his sisters or maybe the trip to the roof top play area where he did not want to participate and instead watched - his sisters however loved it and Millie found herself a boyfriend in the canteen!The plan for tomorrow is to see the surgeons and hopefully see if it is the tube that is blocked I will know more in the morning but as far as I am aware they will be removing the current jejunostomy and gastrostomy and replacing the gastrostomy (they can not replace the jejunostomy due to fear of breaking the internal stitches.) If it is not the tube that is broken then we will be in a worse position than what we came in with as we will have no way to feed him enterally and TPN will be our only route forward.
http://www.caringbridge.org/visit/oliverking
Saturday 3 July 2010
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
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
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/
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