Its now August,its going fast,soon be christmas again,we thought we would treat the kids to a holiday,only a week at butlins but we all deserve a break its been that long,so we booked it for october thats when my wifes sister is going and her family so it should be fun,my sons operation was due in june/july time so as we havnt heard anything we have booked and payed a deposit.
Well would you believe it,five days after we booked the holiday we have had a call from the hospital,they want our son to go into hospital in september then another operation in october,we cant believe it the only time we book a holiday in years,we have to cancel it,but our sons health comes first and the holiday can wait,i contacted butlins and they said i will loose my £130.00 deposit,ive tried to explain but to no avail,ive sent the manager a email,stating it wasnt our fault and to be understanding and will have to wait and hear from them,so now we have a month before our son goes back yet again to the hospital,more worry,more stress and more tears,wish us well.
We have just had a nice email from butlins stating they understand what we are going through and they will give us a full refund when we send them proof of our sons operation date,and they wish us well,and hope everything goes fine,thats nice of them,i think we will go there next year.It is now the 21st of august 2005,tomorrow we have to take our son to the QMC hospital in nottingham,this is a pre assesment where they monitor him,attach wires to his head and check breathing etc,yet again we all all going through it again,the stress and strain on us is unbelivable,and our son whos only nine has to go through it all again,hes such a brave boy,and this is not like having your tonsils out,this is serious major surgery,i know i suppose to be the man of the house,the strong one,but when its a child,your own child,the stress, the strain and worry is huge,sleepless nights,crying,getting upset over the daftest,simplest of things,but we will get through it like we always do,but when it comes to our child lying on that operation table yet again,i fall apart,i sob like a baby,and it feels like ive been kicked in the stomach,my wife feels exactly the same,shes going through exactly the same as me,the pressure on her,the crying and sleepless nights,we go through it all together,we think the same,we have the same feelings,laugh and cry at the same things,thats why i love her,and together as always we will all get through this,and to all who have read this we wish you well,think of us and wish us well for the next two months,we hope and pray that this will be the success we have dreamed for.
24TH NOVEMBER 2005..Before i carry on i would just like to say that i mentioned a young girl dancer in this story,i asked about her while we were in hospital and was assured that all her feelings had returned,and her legs are fine,wonderful news,now i shall carry on.
Its now september 9th and we have been in hospital four days,as they brought the date forward a week to try a different approach,they will try and stretch our son for a week,by putting him in traction and adding 3lbs of weight until he reaches his 15lb limit,if this works he will only need one operation,this time we are all thinking positive,one of the surgeons explained everything in detail,sat us down and talked for ages,very nice man,had time for his patients,which is how it should be,y.h they call him, great help to us in this yet another difficult time,we see bea is still here,shes wonderful,she does a wide range of things,it seems quiet when shes not here,but when she is she gets things done.We are the only ones on this ward,there are adults around the other side and thats where the nurses mainly stay,this is like a no go area when bea isnt here,we cant have a drink theres nobody here to fill the flask,we are not allowed to do it.Our son is now in his halo traction,they are putting the weights on throughout the week,me and my wife are used to this by now so we get him in and out of his bed and into his wheelchair ourselves,we take the weights off and put them back on when hes in his chair,we take him to the restaurant the following day ,and get stared at by people who should know better,we see the prices are still sky high in this place,my wife had one jacket potatoe and cheese..nearly £3 shouldnt be allowed,you can buy a sack full for a fiver,i know they have overheads but three pounds a potatoe..you work it out,anyway now we have been here nearly a week and its really boring,our son hasnt had many visitors this time,i dont know why as we all have a big family,but we have enough to worry about as the surgeon has just told us that it hasnt worked,all whats being pulled out is his neck,terrible news now we get told he will have to have a full vertabrae removed,its very risky as they will be working blind as some of it will be very difficult to get,and will have to be done by feeling,we didnt get much sleep,especially my wife as through the night she had to get up a few times as the weights were pulling our son up the bed and over the edge,we told the nurses but they must have been busy.Ive just been home to check on the other children,i cryed in the car nearly all the way home,everythings fine at home and i get a few more clothes it looks like another long stay for us again.When i get back my heads throbbing,im tired,we just needed that bit of luck to save our son having these extra operations,but we didnt get it,tomorrow is going to be another stressful and worrying time for us as that will be the next operation on our son,tears are in both of our eyes,my hearts missing beats,we cant stop thinking about tomorrow.Its now the day of the operation,which we are really worried about,our son already has his white gown on,and they are attaching the wires to his head,before we know it they are taking him down to the theatre,they say it will take about five hours,they put him to sleep,and cant believe how brave he is,he doesnt moan when they put needles in him and he never complains,we are all so proud of him,we love him so much.He is now out of surgery and in intenive care,his halo is still attached as he will have to go back in traction,the surgeon said all went well but he lost alot of blood,which they replaced,he has taken bone away and says he seems more flexible,but he also said if he doesnt pull out they will have to go back in again and take more bone away,we are shocked and not very happy,this cant be happening,so this operation might work or it might not,thats not what we wanted to hear,the nurse in intensive care said,you must be very unlucky,usually we get patients in here after spinal surgery and when there better we never see them again,you seem to be regular visitors,thanks we said,thats really cheered us up.All the nurses on ICU were really good they answered all our questions and looked after our son really well.Our son is now on the HDU ward the staff on here are great,hes in abit of pain and gets upset because he thinks the bed is moving and his pins are coming out of his halo,the doctor says its the combination of drugs hes on,my mother and sister visit today,my brother and his wife are coming tomorrow,they stay quite a while and our son feels fine now.They are putting the weights on tomorrow,we hope this pulls him straight as he will be in traction for about three weeks,our son did get upset in the night and was sick so his mother sat with him most of the night.Today he seems fine and sleeps most of the day,we seen the surgeon today he said all went fine but it was a nightmare to do,he said we can sit him up slowly when some weights are attached,as his spine is unstable and has soft tissue around.Our son is now being moved back into the childrens ward,we have strict instructions from the sister not to let anyone sit him up to far or get him out of bed as she is away for the weekend.My brother and his wife arrive today,they stay quite a while,its nice to see the family and breaks the boredom of being in here 24 hours per day,our son still has needles in his arms and neck but these should come out shortly.Its now the 19th sept,our son is doing fine,he has 6lb of weight attached and more will be added each day,the pins attached to his skull have not been cleaned since his operation,even though we asked on numerous occasions,so in the end we do them ourselves,we asked an auxillary nurse but she refused,she said there not allowed to do them,strange.Because we are here so long you see the good and bad things in the ward,but when sister marriott is on, the ward is run to great effiency,she is superb at her job,as are some nurses,julie is great she makes our son laugh,not to mention bobby,marie,liz,like everywhere you get a few good and a few bad,but most are terrific at what they do.Our son will be going in his wheelchair today,which will make him happier and get him out and about,abit of fresh air etc,i will drive home today and pick the kids up to bring them over to visit him,then take them back home,today he went in his wheelchair,it hurt but he did well,he stayed in it for five hours,a male nurse called eric,cleaned his pins today,what a nice man,takes pride in his work,we had a good chat with him,very caring.Its now the 20th september,we took our son for an x-ray today,we didnt expect much as he seems slouched over when sitting in his chair,we had a look on the way back,we cant see any improvement,the surgeon agrees,theres still a bad curve there and all they can do is put more weights on.I went to see the main surgeon today in his office and asked him,does he think the traction will work as we dont want him having another operation to take more bone away,he said we will have to wait and see,he said the last operation was very tricky for him,but hes a clever man,very skilled at what he does,we can only hope and pray that the weights pull our son straight,Today is wednesday,its not been a bad day,our son has been out in his chair,we took him to the restaurant,still got the funny stares,the adults should know better,why dont they just ask,instead of staring,then we could explain.
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22ND SEPT..Our son has only been turned over a few times since coming out of the HDU ward,it suppose to be more to keep the pressure off his back,they check his back today and he has a blister and a small leak with blood seeping out,they take a swab for tests,the nurse said it could take four days for the results of the swab,the boy next door has had two wash outs due to infection,a few people seem to have them,hope our son is ok.25TH SEPT..Today is ok,the blister has burst on our sons back and it seems alot better,hes now on 12lb of weight,he doesnt seem bothered he just gets on with it,we have been in 3 weeks now and should be going for an x-ray soon,we just hope and pray that the weights have pulled him straighter.Terrible news,our son has had his x-ray and he isnt being pulled straighter the surgeon says that the last operation was a nightmare to do and because they lost the monitoring and the blood lost they had to stop and all he can think of is that there is still some bone in there which is stopping him from being pulled out,so he has to have another operation to get the rest of the bone,our hearts sink,we put him through a very risky operation and now he has to have yet another risky operation to get the rest of the bone,we cant believe it,is this really happening to us all.Our son goes for a ct scan,just as they thought,there is some bone there which has to be removed.OCT 10TH..Our son goes for another operation today to remove the bone which is left behind,it should take about 4 hours,hes now out all went ok,he stays in icu for a day,then moved back to hdu,hes in alot of pain,which is understandable for all what hes been through,on parent says he deserves a medal,for his bravery and for all the things he goes through.They put him back in traction,hoping this will finally pull him straighter,they say hes a very difficult case,and they have took his case all over the world,asking for suggestions and ways of making him better,but it always seems to fail for some reason.We have noticed our sons pupil is now bigger than the other,also he has some numbness in his lower arm,we cant believe it,one doctor says one thing,another doctor says different,i asked one of the main surgeons,he says it must have happened during the difficult surgery he had,we are getting really depressed now,one thing after another.Our son has more x-rays,we have a look on the way back,it doesnt look good,the surgeon says he hasnt moved,now there saying it could be because he has a strange ribcage shape,thats only because he was put in a plastic jacket for two years while we waited for his first operation when he was younger.Well the surgeon says its like we have come to the end of the road,we have tried pulling him out and it hasnt worked,we have removed bones and it hasnt worked,so all we can do now is fuse most of his spine together and send him home in a halo jacket,i dont know how much we can all take,its been a long haul,very tiring,stressful and emotional,but he cant keep going through these risky operations,so the safeist option would be to fuse him.Its now NOV 4TH and we cant believe what pressure we are being put under,the surgeon comes and speaks to us today,he says we have two options one is to fuse him,and the other which we cant believe is two cut his breastbone straight across and hopefully this will pull him out,the surgeon says its never been tried on a living person here before,but it has been tried on torsos of dead people,we cant believe what we are hearing,after all our sons been through and they come out with this suggestion,they cant give us any idea of the risks involved,nor if it will work or not,so we said no,hes been through enough,plus there are no guarantees it will work,we were told if we put him in traction,if we remove a vertabrae,these havnt worked,we cant keep going on ifs,its hard to let people experiment on your own child,hes only nine for gods sake.6TH NOV Its another big day for us all tomorrow,our son will have a final operation to fuse him as he is,to try and stop it getting worse,hes watching television now,and keeps saying he cant wait until he gets home,he watched a few fireworks yesterday from the window but its not the same as being at home.7TH NOV..We took our down to the theatre again,he got upset and was feeling sick,he went down at 7 and came back at 2,he went straight to hdu ward,as they said intensive care wasnt needed,we went for a cup of tea while the nurse was with him,while we were away they took a needle out of his wrist,when we got back we checked him and his sheets were covered in blood,the blood was still pumping out of his arm,we shouted the nurse,she was busy with another patient she said,we went mad shouting again,you shouldnt leave him until he has stopped bleeding we said,lucky we came back when we did,terrible. The next day he went back into the childrens ward,his neck is very swollen,we are concerned as its never been that swollen before,the doctors assured us it would go down and theres nothing to worry about,but as you all know the worrying is part of being a parent,the next day they take his needles out of his arm and neck,hes now in his wheelchair and playing with his toys,he seems fine.12TH NOV..Yesterday they took a cast of our sons body to make him a plastic jacket,as he has to go home in a halo jacket,when hes in bed he gets alot of chest pain,the doctors come down and check him,they will keep an eye on it they said,our son said he would like to thank a motorcycle champion called JOHN REYNOLDS who gave him a picture with his autograph on,that was very nice of him,he had a bad accident,but went home before us so we wish him well and hope he makes a quick recovery,also he would like to thank JIM DAVIS from heart 106 radio,it was very kind of him to come out and visit our son in hospital,thanks to you both.We are looking forward to going home but have to wait another three days for the jacket to be fitted,when we do finally get it fitted,our son doesnt mind it all he wants to do is go home,finally after 11 weeks in hospital and three major operations we are all going home,nothing never really went as planned,our son in the end had to be fused as he was,he now has to wear his halo jacket for a minimum of three months,then when it is taken off we can only hope and pray that hes in a good position and that he doesnt have to go thrrough major surgeries in the future.DECEMBER 2ND..Our son had to go back in hospital today due to the pins which go into his head have became infected,he had four pins,two were infected and one was abit loose,he had to have another operation to move these pins,but to our suprise when he came out of theatre,was that now they have added another four pins,so now he has eight pins in his head,we were there nearly all day,he seems fine now,and like always he just gets on with things,but this year hes been through enough,so we are just going to enjoy christmas and make sure him and the rest of us have a great christmas,and to everyone who have read this story,we wish you all a happy christmas,and hope you all have a wonderful future.
7TH FEBRUARY..We have been to and from the hospital every two weeks for check-ups since we came home,today they checked our sons pins on his halo,some were loose and some infected,they also done a ct scan and not very good news,nothing has happened there has been no fusion of the bones and because his halo is loose,he will have to have another operation to replace a few pins and tighten the others,they rang us a few days later to come in hospital for the operation,we went but after waiting seven hours and nothing happened we drove home in disgust,they rang us and told us to go a few days later which we did,our son had the operation to tighten/replace the pins,they let us home the same day.Five days later he has an infection in his pins,his face has swollen on one side,we rush him back and they keep him in overnight,they give him medication by drip,we stay overnight with him,in the morning the swelling goes down slowly and they let us home,he has to be on the medicine for the next two weeks.About three weeks ago the local newspaper wrote a story about our son and how brave hes been for all the things hes been through,a few days later central news come out and do a story,he was on the tv news explaining to others about his condition and all the operations hes had to have,we know things have not gone to plan for us,but its still best to catch these things early and try to stop them progressing,thats one of the points we were trying to put across to others who might have the same condition.Sister Mary from the QMC hospital has been ringing us at home,asking about our son and how he is doing,thats very thoughtful of her,shes a very caring person and we noticed that when we first met her,years ago when our son had the first of his operations.We do not have to go back until the 16th march,but because theres been no fusion,our son will have to keep the halo jacket on for another three months.16TH MARCH we went to the hospital and our son had his pins tightened,it was upsetting it hurt him very much,he was screaming and shouting,the pins were suppose to be on a tension of 4,but they said the tension was only on two,and had to be tightened up to four again,he only had an operation a month ago to tighten them,cant see how they can come that loose in a few weeks,but he was to upset so they only managed to get them to three,and some had to stay at two,we have to go back to tighten them again on the 30th march,we are not looking forward to it,as we know they will all have to be tightened.30th march our son had his pins tightened all to tention four,he was very brave it hurt abit but he didnt complain,one of the pins looks like its to far in,it looks smaller than the others so we told them not to touch that one,anyway he has eight and only four need to be doing there job.We are now in may and our sons complaining about a sore on his back,so we take him to the hospital,they remove the back part of his jacket,
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