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while his laying still on the bed,he has a big bump which is very sore and leaking,they take the jacket to cut an hole in it so it doesnt rub on the sore,the doctor thinks it could be some metalwork or bone causing it,so they send him for an x-ray,the doctor checks it he thinks it some rib bone causing it,but seems happy that the pressure is off his sore now and sends us home.He is trying to get us a ct scan for next week,as our sons been in this halo since last september and is still wearing it,we hope the bones have fused and his jacket can be removed.MAY 11TH 2006...We went to the hospital today so the halo could be checked,also for a ct scan....TERRIBLE NEWS..They tighten three pins it was looking ok,one to go..but on the last pin its to loose,our sons neck is unstable,they want us to stay in as its urgent and needs another pin added,we got there at 10am,they say they might fit us in later today,i say if its urgent why not do it sooner,they say its not life threatening,its only limb threatening,we had to wait all day,then finally at 11.15pm our son has his operation,he now has nine pins in his skull,also what really upset us is that after seven months in an halo jacket to help his spine fuse,nothing has happened,no fusion at all,my wife is crying her heart out,after all hes been through,and this was suppose to be the last resort,nothing has happened,we cant believe it,we are all being put under to much stress and strain,not to mention what our son has been through,the surgeon wants to speak to us next week,but we need help,if anyone reading this has any help or suggestions on why its failed so many times,please get in touch,they might be another reason another condition he may have,more tests are needed now,we will certainly point it out to the surgeon,but everything seems to fail,we are not bad people,our sons not a bad person,we have not done a single thing wrong in forty years on this earth,but its like we are being punished,why should a nine year old boy go through so much and still have it to fail,and i certainly will have a problem in later life due to stress,i know it comes with being a parent,but being put under this much stress and strain will certainly play a part later on,its not much to ask for a child to get better or have a better standard of life after an operation,but why after so many attempts does it always fail..im tired i have to go,not had any sleep for a few days..luck just abit of luck thats all we need.19TH MAY..We went hospital today for a check up on our sons pins and to speak to the surgeon,the surgeon came as soon as possible as he was in theatre that day so it was good of him to make time for us,but not very good news,he wants our son to come back into hospital in two weeks time for more surgery,he says that their is some fusion but there must be a gap/section which hasnt fused and he wants to put more bone graft into that area,he also wants to try a new bone protien(bmp)which they use on children in america,which by coincidence i was reading about on the internet a few days earlier,and was going to ask him about it.He says he would like to use it but our uk laws might forbid him doing so,as somethings you cant use on children under 12 years old.We had a good chat and he thinks this would be the best treatment for our son as everything else has failed,and because our son is such an unusual case we agree that it just might work.It is very difficult for us all,but also for the surgeon,as he is trying his best for our son,so in two weeks time our son will yet again have another operation,we are not very happy about it but if we can get the bmp it might be the answer to getting a good fusion and to finally get our son out of the halo jacket which hes been in for so long,after the surgeon left us we had to wait three hours,waiting for a young man to tighten our sons pins,i asked him a few times but he said he was busy,i asked a nurse to tell him which she did but still he never came,so we walked out in disgust,he may well have been busy but the hospital tell us to come so why let us wait three hours or more to get something done that only takes five minutes,if that person got up from his chair to go toilet it would have taken him longer,than to tighten our sons pins,they leave us sitting there with no explanation,terrible.Also what we think is absolutely terrible is that..in the meeting which the surgeons/doctors have all the other doctors/surgeons said that they would not help our son or go any further as they have tried everything,they would just give up and wouldnt bother helping him anymore,this is terrible you put your kids life in their hands,you trust them and then they turn around and say leave him,this is terrible,i said what would happen then,i was told they would take him out of the jacket and leave him,i said then his spine would get worse and collapse,i was told ..exactly.We cant believe what we just got told,this is a childs life/future at stake,does this mean you get different care from different doctors,we are glad we have mr Webb then,at least hes trying and hasnt given up.Our sons had parts of his spine fused and parts taken away,so how can some doctors say ..leave him,absolutely terrible.Some people say to us that he looks worse now than before all these operations,but he may have been alot worse if we had left it,we say,scoliosis progresses and needs halting or controling,sometimes we do sit down and think we wish we never had it done,but thats only because we have all been through so much,but if it worked first time it may have been a different story.We went back hospital on the 24th and the surgeon wants us to come in on the 29th and the operation on the 30th may,we had a chat with sister mary and she says that the bmp has been used on children in the uk before,and that the surgeon has permission to use it on our son,so in a few days time our son will have yet another operation,and with using this bmp we hope that after all this time,that they can get our son into a good position and a good fusion,we should be in hospital about a week the surgeon said,so wish us well and thank you all who have read this and sent messages.
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29TH MAY..We are all back at the hospital now,our son will have yet another operation tomorrow,they put us in a side room which was nice,we have never had a private room in all the times we have visited hospital,we soon settle into the same routine yet again.
30th may..Our son goes down to the theatre again,he seems ok,but gets upset when they give him the gas,they say it should take a couple of hours.We heard them say they have the bone protein in the fridge,we waited an hour then took a walk to the shops downstairs,to our surprise we saw the surgeon walking through the main doors,he said he was going straight to theatre as it takes a while to get our son ready,he said he didnt know if he had the bmp,as they were unsure if they had permission to use it,we told him we think you have it as we heard his team mention it.Five hours later we get taken down to the recovery room,our son is feeling abit sick and his neck is swollen,which is understandable for all what hes been through,they said they were pleased with the operation,all went well.Our son goes straight to the hdu ward,he seems fine and we stay with him until 11pm,my wife goes to her room,i am upstairs in the parents room,our son gets better by the day and we are soon back in the childrens ward,as we had to be moved out of the side room because another patient needed it,which we didnt mind and understood,the matron spoke to us and said she had been trying all week to get the bmp,it was hard because of the cost involved,but like she said it shouldnt have to come down to money, this is more or less the only option our son had, and the surgeon agrees that we have to give our son the best option left.So after alot of hard work by all involved,the hospital had the go ahead to use it,the surgeon said he had added a long rod with a hook at the end which is then hooked into his spine to help pull him up and for extra support,then the bmp is used around the spine,and hopefully this will all set into place,the extra rod was connected to the metalwork he already had in from previous operations,he still has the halo jacket on,which we understand,and given time the bones should fuse together,he did have a problem with the jacket sticking into his hips but this was taken off and altered so it wouldnt hurt him,they did a great job,keeping his head still while this took place,we dont like it when the jacket is removed as we dont want him to loose the good position he was already in,but it had to be done to take the pressure from his hips,he had an x-ray on the friday just to make sure that the hook hadnt became dislodged,but it looked fine and even though they had us down to leave on the monday,they were pleased with the x-ray and our sons recovery so they said we could go home that friday afternoon.This time we had a pleasant stay in the hospital,all the nurses were helpful,mr Webb and his team did a great job on the surgery and on getting the bmp,our son is now home and doesnt complain of any pain,we have to go back this tuesday for a wound check and to tighten the pins,then in time our son can be removed from this halo jacket,which hes been in for so long,we would like to thank all the nurses and staff on ward D8 at the QMC hospital in Nottingham,and especially Mr Webb and his team.We went back for the wound to be checked,they laid him down on the bed and removed the back part of the jacket,the doctors and nurses checked the wound,it looks fine all nice and clean,they are all pleased with how it looks,our son was upset when they removed his plasters but soon calmed down and it was good news that the wound is nice and clean,another more senior doctor tighten our sons pins,our son and us were much happier that this person did them because he took his time,just tightening them bit by bit,which is less upsetting for our son,we think its best for them to be done this way on children,its less upsetting for them,so all was fine today,all went well and our son was not upset to much, which is the way it should be.The local newspaper wrote another story about our son using this new bmp protein,then the next day central news did a story on television about how brave hes been and by using this protein the halo jacket will finally be removed hopefully in a few months time,they want to do another story when the jacket is removed and hes finally free from the halo jacket.JUNE 29th..We went back to hospital a few weeks ago,they laid our son on the bed and removed the back part of the jacket and took the plaster off,all looks well although he has a little lump at the top, it feels solid to the touch,but he had that before the last few surgerys,they dont have to take the jacket off no more as they didnt put another plaster over the wound,a different person tightened his pins,abit faster than the last person,also went abit far on one pin,suppose to be on 4 but he tightened to 5,we told him about it and he said it would be alright,but we watch the doctors at everything they do,just to be sure,as all parents do we only want the best for our children,and to make sure they are being looked after properly,we have to go back to Nottingham this tuesday for another check up.Tuesday..We have just came back from the hospital,all went well,the doctor who takes his time and is more careful tightened our sons pins,james his name is,he tightened them bit by bit our son was not upset,which is how we want it to be,james did mention that one pin was on five so he left that one alone,we knew from last time that it was over tightened
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We are going back tomorrow july the 18th,to have them checked again,we should soon be hearing about a ct scan to see how things are progressing,our son is happy and just enjoys himself.Its now the 5th august 2006,our son had his 10th birthday the other day,he had a good day,yesterday we took him back to the hospital for another check-up,they said all is fine,he had an x-ray,there is still a curve at the top of his spine,and we noticed a bump below his neck,they said it was the hook which they attached,that is what we could see and feel,but they said the x-ray looked fine,everything is still attached,and we will have a ct scan in three weeks time,then maybe this halo can come off,as our sons been in his halo since last september.Thursday 17th august 2006...Today we went back to the qmc hospital for another check up on our sons pins,we waited a while because they were busy,a new person tightened our sons pins but he was overlooked by a more experienced doctor,they took us to a small room and started tightening the pins,our son has nine pins attached to his head,but we only concentrate on four as some of the others are not doing anything,they start to tighten them,the first three are fine or only need tightening abit,but then the last one is doing nothing,its not tightening,all the pin is doing is just going around,will ask them to stop,we cant understand it as two weeks earlier it was on a tention of four,now its doing nothing,our sons getting upset,crying,the doctor says he may have to change it,we said no,our son is not having another operation to change a pin,when he has nine in already,we ask them to try the other two which are close by,but which no one has touched or tightened for over six months,to our surprise one was on tention three,and the other was tightened to tention four,we cant understand it as they were not working thats why they were never touched,it seems to us that they might not have been tightened at all,because if the bolt is not loose enough then you are working against the halo and bolt,and thats giving you the tention,i know three were ok,but im not sure on the last one,and why was that last pin which has always worked and was always on tention four,why did it not work,no tention at all,we will find out when we go back in a few weeks,our son was upset so we just wanted to get him home,he had his usual mcdonalds on the way back,they sent him some free vouchers as hes always going there on the way home,when we got home our son had a letter waiting for him,he opened it then a smile came to his face,it was a signed photo from ant and dec from the tv,saying best wishes,that was kind of them,he likes watching everything to do with ant and dec,also alan sugars the apprentice,he likes him,alan sugar sent him a signed photograph a few months ago,which was good of him,we like it when our son smiles and is happy,hes been through alot so deserves some happiness,he still has alot of bad nightmares though and has done for a few years now,sometimes he shouts for me four times a week,sometimes it could be just once,i used to write them down when he told me about them but it was happening to often,now its just like its a regular thing,though i had to laugh one night he shouted me,i shot out my bed that fast,i nearly knocked myself out on my bedroom door,our son had a laugh at that and soon calmed down and went to sleep.We now have an appointment for the beginning of september for a ct scan,so then we will know how things are progressing and if the halo jacket can be removed.We arrived at the hospital today for a ct scan and for our sons pins to be tightened,the scan went smoothly,but we had to wait four hours for the pins to be tightened,our son doesnt get to upset and the doctor who did them took his time and made sure it wasnt to unpleasant for our son.SEPT 12TH..We are getting worried that nobody has gave us the results of the scan that we had last week,but also today the hospital has rang and wants us to go in tomorrow morning to see the surgeon,they wont give us any details over the phone,we are worried now,if all was ok with the scan why not tell us over the phone and put our minds at ease,but no they still want us to see the surgeon,ive just rang his home number but hes not there,so i ring his secreatary,i explain our concerns and she says she will tell him as hes only on the other phone,she says not to worry and will ring me back,ten minutes later she rings back,saying we still have to come in and see the surgeon and his fellow,i asked to speak to him as hes only in the next room,but she says sorry i cannot as hes gone to surgery,so we have no explanation over the phone about the results,the surgeon wont speak to me over the phone and she says dont worry,what do they expect,we hope the results are good tomorrow,but what we cant understand is why not just say on the phone,usually if its good they will tell you,if not they will call you in,we hope and pray that its all ok,i have to go now and get some sleep,its an early start tomorrow,wish us well.13TH SEPT 2006..We are not sure about what we are going to be told today,the surgeon has just walked by with two collegues,we wait in one room while they talk in another,they all come in,the surgeons looks at us and says....everything is ok we are pleased with the scan,give it one more month just to be on the safe side,and then we will take the halo jacket off,what a relief,we smile and are very happy, excellent news for all off us.
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