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Location: Wales (UK) | I was just wandering if their are any other UK families using this site.
We have a 2yr old Son called Reuben who has congenital scoliosis. His curve is currently 75 degrees. He also has two hemivertabrae and fused ribs too. This does not affect his daily life whatsoever, he is a typical lively two year old, who enjoys being busy from 'sun up to sun down'. We have been fortunate that his condition hasn't impaired him at all.
Reuben is scheduled to have his first VEPTR operation on January 12th 2005 at the Birmingham Children's Hospital.
He is under Mr Marks' team and his main consulatant is Mr Spilsbury at the Royal Orthopaedic Hospital in Birmingham.
I have contact with a couple of families whose children have had the VEPTR here in the UK, I find it a great support.
Trace
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| we have a 4yr old girl born with marfans syndrome. she has severe scoliosis 120 degree. we live in bristol and waiting for an appointment to go to the bristol childrens hospitial for the veptr procedure. chloe has been in and out of hospitial since she was 6months old she has very complex medical needs. at the moment the veptr is the only option we have. she is a wonderful little girl and lets nothing stop her. |
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Location: Wales (UK) | Oh it is so nice to hear from you. Sorry to be so ignorant but what is Marfans syndrome?
Reuben has a 80 degree curve and had his first VEPTR fitted in Jan of this year. His curve was reduced to 60 degrees. He goes back in may to have it lengthed. He has to have a second device fitted in about a year as he was too small to take the both this time.
You are lucky that you live in Bristol and have such a fantastic hospital so close. Alot of the hard work for us is the travelling. We live in Mid wales and have to travel to Birmingham which is 2 1/2 to 3 hours. It is also made worse by the fact that Reuben HATES the car!!!
Apart from his curve, fused ribs and extras vertebrae Reuben is just like any other active 2 yr old. He is such a strong and spirited child, and I truly believe that this is what helped him get over the VEPTR operation so well. He did not go to intensive care and we were home on day 4, after 1 week he was on no pain relief and was running and climbing as ever. The worst for us was the itching as the wound was healing.
Do you know when you have an appointment?
If you need to know anything, then please ask.
My home email is also [email protected]
I tend to check this more often!!!
Take care and please stay in touch.
Trace x  |
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| hi all
i am so so glad that i found this site
my 20 month old son oliver has just been recomended to have this procedure . he is at the queens medical centre in nottingham under mr freeman . mr freeman is talking of bringing mr bob campbell over from texas to do the procedure.
as we have only been told about it today we are very worried . oli's curve was 48 degrees 6 months ago but today is now 75 degrees.
if any one would be so kind as to tell mandy and myself(steve) any experiences you have with this procedure we would be very pleased
thansk for taking thetime to read this
steve |
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Expert
Posts: 3970
   
Location: Plymouth, Pennsylvania | WELCOME TO THE VEPTR BOARD,
TO THE WILLIAMS FAMILY, AND TO STEVE AND FAMILY....
AS A FAMILY WHO HAS BEEN WITH THE "TITANIUM RIB PROJECT" NOW
FOR ABOUT 5 YEARS, WE WOULD BE MORE THAN HAPPY ANSWER ANY QUESTION...
ZOE WILL SOON BE 7 YEARS OLD, AND IS A RECIPIENT OF THE RIBS,
AND I AM SO HAPPY TO REPORT,
THEY HAVE NOT ONLY SAVED HER LIFE, BUT GIVEN HER A MUCH BETTER QUALITY OF
LIFE AS WELL...
THIS "TITANIUM RIB WALK OF LIFE" THOUGH NOT EASY, IT DOES BRING
THE HOPE FOR OUR CHILDREN THAT NOTHING STILL CAN COMPARE TOO...
GOD BLESS, AND I LOOK VERY FORWARD TO HEARING MORE ABOUT YOUR FAMILIES....
JOHANNA LAMBERT
PLYMOUTH, PENNSYLVANIA
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Posts: 82
| thanks jobey
one little question
my son oliver is a typical 2 year old lover rough and tumble
will he still be able to play normally after he has had it done
thanks steve |
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Elite Veteran
Posts: 1076
Location: Silver Lake, Kansas | Hi Steve,
GREAT to have you on board!! To answer your 'little question' from my perspective and experience.. the children can go on to continue having fun and playing around. There is some element of caution however. titanium ribs can break. while i've heard stories of rib kids playing footbal... that would be too risky for me personally to allow (at this point). But Josie still wrestles with her older brother,and runs and falls.... there is just no tossing her on her back, or bear hugs or things like that.
i'm sure those other members with BOYS could give you even better advice and recommendations.
shawn |
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Posts: 3970
Location: Plymouth, Pennsylvania | I WOULD MORE DEFENIATLY AGREE WITH SHAWN....
AND SPEAKING FOR ZOE, THINGS NOT ONLY WILL PRETTY MUCH
PLAY WISE, REMAINED THE SAME,
MANY THING WILL BE ALOT BETTER.... |
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| Hi, I live in the UK and my daughter, Hannah, is 2yrs 10mths and has Goldenhar syndrome. She has scoliosis of the spine and fused ribs which we only found out about in July 2004. As a result it was decided by the consultant that she would be a good case to have this procedure. It has taken ages for the operation date to come through and is now scheduled for 21st Feb (although there is now a slight problem in the fact that the hospital has to make a presentation to their board of directors about cost etc etc as she will be one of first children in UK to receive this op. - therefore if they don't get the go ahead then it may be put off for a couple of months).
Anyway, it seems that Hannah is due to be a bit of a guinea pig over here as far as the procedure is concerned,(so we have no British parents to talk to) but I know that a few children in USA have had it done. I would love to hear from parents that have gone through the experience and how the children have coped (my main worries are that she will be impaired physically when at the moment she is a lively, happy child jumping,dancing and climbing - I am worrying about whether she will be able to continue doing most things).
How has everyone else coped? I don't doubt for a second that the operation is a big one and carries all the risks of any major op, but some reassurance would be good!
Hope to hear from people soon.
Ramona
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| Hi, I have just posted a message on USA board and then realised there was one for UK - I am so pleased!
My daughter Hannah (2yrs 10mths) was born with Goldenhar syndrome and has scoliosis of the spine and fused ribs which we only found out about in July 04. Anyway she is scheduled to have VEPTR procedure on 21st Feb (although slight prob with hospital - not sure if will go ahead or not). She is under Nuffield Orthorpaedic Centre in Oxford and having op done at John Radcliffe in Oxford.
We are absolutely petrified over her having this done although we understand that it is important for her to do so. Our consultant Mr Wilson-MacDonald has spoken to and shown Dr Campbell in US the xrays and CT scans and he feels she is a very good case for surgery but I also realise that children here in UK are relatively guinea pigs as far as this procedure is concerned.
My main concerns were about her quality of life after (know that she will have to be careful) but wanted her to continue to be able to run, jump, climb and do all rough and tumble toddlers do!
Very stressful for us at moment as she has a twin sister and her op is scheduled 10 days before my due date with next baby!! The NHS certainly timed it well!!
Anyway would love to hear from other parents about to go through or that have been through procedure - my email is [email protected] which I check everyday, or I will log back on here again.
Hope to speak to someone soon
Ramona |
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Posts: 3970
Location: Plymouth, Pennsylvania | DEAR ROMONA AND FAMILY,
WELCOME TO THE VEPTR BOARD....
SPEAKING FOR OUR ZOE, I CAN TELL YOU THAT SHE HAS BEEN ABLE TO DO,
ALL THAT SHE DID BEFORE THE SURGERY, AND IT HAS TRULY ENHANCE HER LIFE
TO DO MORE....
IT IS A TUFF SURGERY, BUT OFFERS A HOPE LIKE NOTHING ELSE IN THIS WORLD
STILL CAN COMPARE TO....
THERE ARE AT LEAST ONE FAMILY THAT I KNOW OF THAT HAS BEEN COMING FROM UK TO THE STATES TO HAVE THE SURGERY DONE NOW FOR ABOUT 4 YEARS....HOPEFULLY WHILE I AM LOOKING IT UP, SOMEONE WILL JUMP ON HERE, AND
GIVE YOU THAT INFORMATION....BECAUSE I THINK THIS LITTLE GIRL, IS ALSO NOW GETTING HER EXPANSION DONE IN THE UK NOW ALSO.......
HOPE TO HEAR MORE FROM YOU...
AND I WILL GET BACK TO YOU WITH MORE INFOR....
GOD BLESS,
JOHANNA LAMBERT
PLYMOUTH, PENNSYLVANIA |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | WELCOME TO THE ROMONA FAMILY....
I AM AFRAID I POSTED YOU A REPLY, BUT SOMEHOW ON THE WRONG PAGE, SO I WILL
JUST REPEAT MYSELF HERE....
AS WE FOUND WITH ZOE, SHE COULD DO MUST THINGS AFTER SURGERY, THAT SHE DID BEFORE,
AND IT TRULY DID, AND STILL DOES ENHANCE HER QUAILITY OF LIFE....
THERE IS ALSO A FAMILY FROM THE UK THAT HAS BEEN COMING TO THE STATES FOR A FEW YEARS NOW,
AND I AM PRETTY SURE ARE NOW GETTING THE EXPANSION IN THE UK...
I HAVE ASK THAT SOMEONE JUMP ON HERE AND GIVE YOU THE INFORMATION, I THINK THEY CAN BE OF
GREAT HELP TO YOU....
GOD BLESS, AND LIKE I MENTION WE LOOK FORWARD TO HEARING MORE FROM YOU....
JOHANNA LAMBERT
PLYMOUTH PENNSYLVANIA.... |
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Posts: 2039
Location: Springfield, Mo. | Wecome to all of you to this site. I agree totally with Shawn. |
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| hello trace so nice to hear from you. marfans is arare genetic syndrome.one copy of a particular gene which produces a protein called fibrillin is faulty. fibrillin helps strengthen connective tissue which includes the skin, ligaments and blood vessel walls.for chloe this means she cannot walk, has a mechanical valve in her heart, lens dislocation in both eyes, and the most worrying at the moment her severe scoliocis which is crushing her lungs.we dont have a appointment as yet her dr is trying to get bob cambell over from the states to do her op. chloes syndrome is life limmiting we were told she wouldnt live to her teens, but without the veptr we have only afew years, with the veptr if every thing goes to plan it could give her a few more years. her dr says the veptr hasnt been done in anyone like chloe before so we hope and pray she gets through this, she is a little fighter and lives life to the full. i am so glad your little boys op went well and he stays well. havnt got a email address yet not much good with computors when i get one i will let you know. hope to hear from you soon take care from tina. |
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| hello steve and mandy like you we are waiting for the veptr surgery for our little girl chloe who at 4yrs old has a 120 degree curve. we hope dr bob cambell will do chloes surgery as well, he is going to be a very busy man. i cant share any experience with you at the moment like you its a waiting game but i hope we can at some point. speak to you soon from tina &keith williams. |
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| williams family - 2005-02-08 5:44 PM
hello steve and mandy like you we are waiting for the veptr surgery for our little girl chloe who at 4yrs old has a 120 degree curve. we hope dr bob cambell will do chloes surgery as well, he is going to be a very busy man. i cant share any experience with you at the moment like you its a waiting game but i hope we can at some point. speak to you soon from tina &keith williams.
do you mind me asking where you are in the country
i know that there is one operation planned for around april time in nottingham with,bob campbell coming over for that would that be yours?
we asked aboutthe rough and tumble for our oli one reason is because his sister is severly mentally and phyically disabled and would not be able to understand that she has to be very gentle with him and it would be very sad if we could not let them roll around and play on the floor . heather is almost 10 and is a strong little girl so we are even now very carefull when they are playing together but we are very lucky that olis condition does not restrict him at all at the moment he runs around and really throws himself in to everything like all 2 year old boys do .
steve |
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Location: Wales (UK) | Hello Oliver and Co.
Reuben had his first VEPTR in January and is back to his normal ways, jumping,climbing all normal things for a busy 2 yr old.
I was really scared that the operation would change him, but it has not. He knows somehow what he can and cannot do it is an amazing thing to see I can tell you!!!!
We live in Mid Wales. My home email is [email protected]
If I can be of any help or if you have a zillion questions please ask I am only too happy to help as I was in your position a few weeks ago.
Love
trace |
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Location: Wales (UK) | Hello Tina and Keith
We too thought that the Prof would have to come over from America but so many of the British surgeons are now licensed to do the operation.
Although I am not familiar with marfans, I have read alot on the VEPTR procedure so anytime you need any thing give me a shout.
Trace (Home no 01597 822930 if you want a natter) |
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Location: Wales (UK) | Ramona
Hey there are suddently British families everywhere-great!!!!
Golly a new baby on top of all of this, thankgoodness the feamle of species can cope with more than one thing at a time.
Well as you would have read Reuben has got congenital scoliosis and hemivertabrae and his bottom curve was 80 degress and the top one i, well who knows!!! Anyway Veptr fitted and Reuben is thriving. 4 weeks ago today it was, boy time flies. He is as busy and as crazy as ever. We were told that being such a busy boy he would probably break the device at some point, this is nothing to worry about as it can't damage him. I am nervous when he is bombing off the sofa and being a crazy chap but he know what he cannot do at only 2 yrs and 1 month of age.
it is amazing, and all the children you read about are amazing and really fill me with inspiration.
As said previously my home email is [email protected] and my home number isd 01597 822930 if you ever fancy a natter or answers to the many questions.
We are under Birmingham Childrens Hospital and are in contact with a family in Birmingham who's two yr old Son had the VEPTr in September.
take Care
trace |
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| hello steve and mandy, we live in bristol and will be going into the bristol childrens hospitial when we recieve the appointment. we to have a disabled son who is 23yrs old and can be a bit rough with her (he doesnt mean to) we dont have any young ones the next one from chloe is 16yrs. from tina |
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Elite Veteran
Posts: 1076
Location: Silver Lake, Kansas | Ramona,
As for Josie, the surgeries/impants have not slowed her down one single bit!!!
her last surgery was just a couple weeks ago and two days after surgery she was climbing up onto the bed. pulling herself up by her arms and swinging her leg up onto the bed.. i am confident hannah will recover quite well and amaze you at her resiliency. as Johanna has said many times... their quality of life is greatly improved.
shawn |
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| hello trace, i have been looking at some of the pictures of children who have had the veptr procedure and all have been done by going through their back, chloes consultant said that he would have to "crack open her chest" do you know of anyone who has had it done this way ? iam abit confused now i think i should speak to her dr again. tina |
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Location: Silver Lake, Kansas | i have personally never heard of that being done in the program.
shawn |
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Posts: 697
Location: Alexandria, Virginia | Welcome to the Williams family and Steve and family.
My son, Ian, was 21 months old when he had the VEPTR surgery. We, too, were worried about limitations and what he could or couldn't do. Two and a half years later, he is a typical four year old. He runs and plays with all the other little boys and girls in his class. Unless you saw him without his shirt on, you would never know anything was different. I tend to be a little more liberal in what I allow him to do and his doctor has not put any restrictions on him. So far, so good. In fact, a year ago, Ian fell onto some hard concrete from about four feet (he was horsing around on some bleachers and mom was watching my one year old) up and broke his arm. His titanium rib was not impacted at all.
Take care,
Cindy |
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| Hi Trace, Williams family, Steve and Mandy
We had some bad news yesterday in the fact that after our consultant presented to the board of the hospital, Hannah's op has now been cancelled for 21st Feb. It will be done but not for a few months now. So frustrated, disappointd, upset - had really geared ourselves up for it and was hoping that in 3 weeks Hannah would have had it done and be back on the road to recovery - now feel like it is hanging over us again. However suppose I don't need to worry about going into labour whilst she is in hospital (was always going to be a risk!!)
For Williams family, We were told that Hannah would have an incision made into her back, ribs expanded and then the rods attached to the back of her ribs and under her arm (2 in total) - they haven't mentioned to us about having to crack her ribs open - perhaps with Chloe's condition they have felt that is the best way to do it, but I would speak to your consultant again to put your mind at ease - I know that we keep coming away from appointments feeling like we're not really sure we have enough info.
Trace, Cindy, Shawn, so glad to hear that all of your children are continuing to have the same quality of life after the procedure as had before - really reassuring to hear.Hannah has had a number of ops since she was born and has always recovered so quickly - real fighter - hoping this time will be no different.
Take care all, Ramona and Gavin |
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| Hi Johanna, Thanks for your message. Not sure if you will have seen on UK board but Hannah's op has now been cancelled for Feb and it to be rescheduled for a few months time. Very frustrating and upsetting but it has been reassuring to hear that other children like Zoe have gone through procedure and have come out the other side being able to do the same as they did before.
Take care
Ramona
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| Hello Trace and Family,
I've just discovered this web site. Our 19 month son Freddie is under Mr Marks at Birmingham. We saw him this week for the results of Freddie's scans and discovered that as well as his hemivertebra at T10 (which we knew about) he also has some abnormalities with his ribs which will require the VEPTR. His first op to remove the growth plate on his hemi will be this spring and then in a year or so MR Marks will fit the VEPTR. This is the first time I've been in touch with anyone who has been through similar. Freddie is a busy mad normal little boy and it's good to hear that Reuben is back to normal after his op. I really don't want to wrap Freddie up in cotton wool so it's encouraging to hear your story.
We live in Shropshire so not quite such a treck as you to the hospital. They're brilliant there aren't they?
Take care
Sally |
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Location: Wales (UK) | I am so sorry that the surgery has been cancelled, but maybe it is a blessing thatt you can have your lovely little baby without the hastle of being in hospital for the VEPTR.
I know the frustration that you are feeling, it sometimes feels like it is constant battle in what is alredy a really hard and emotional time.
Which Hospital are you under?
My home email is [email protected] and my home phone is 01597 822930 if you need a natter, anytime.
Trace x |
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Location: Wales (UK) |
Wow weeeee another little fella who has hemivertabrae!!! So far there have been very few people who have heard of such a thing!!
Reuben has two in the thoracic area, I am not sure what number they are though. I have asked Brum for a copy of his x-rays.
I cant believe you are under Brum too. Mr Marks is great he has such a wealth of knowledge and I like his straight talking too!
Have you been to the Children's hospital yet? That where they will do th operation. I guess you see Marks at the Woodlands.
Where are you in Shropshire? We live in llandrindod Wells (26 miles south of Newtown).
I check my home email more often, so if you want you can email me on [email protected] or if you fancy a natter 01597 822930.
Before Reub went in for his op, I phoned a lady in Brum whos Son has had the VEPTR. I found it such a help as I had so may questions and worries and fear of the unknown, but she really helped me sort myself out and of course helped prepare me for what to take to hospital etc.
It is really nice to know that there are so many British Children emerging.
I do not wrap Reuben up in cotton wool, he wouldn't let me being a typical 2 yr old chappy!!!!!
Take care
Trace x
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Location: Harrisonburg, VA Shenandoah Valley | Dear Ramona,
Welcome to the board. Our experience with Josiah was that we originally thought when he hit the magic 6months of age that he would automatically have the surgery which would have been Jan 2003 we then had dates for every month starting in May2003, He finally had his surgery in October 2003 in San Antonio, TX. He has had 1 replacement of his rib and 3 expansions. since then. He is 2 1/2. Before the surgery they told us Josiah would never crawl or walk. He now does the butt scoot, boogey. and in May he is going to have surgery on his right leg, casted and then put in a locking leg brace and try to get him on crutches or a walker. The surgery has given him a bright future. Now I am rambling but I have only positive things to say about VEPTR. Josiah would not be here today with out it due to the respiratory insufficency syndrome everything else is a big plus.
Hope this helps.
Lisa |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | DEAR RAMONA:
I AM SORRY THAT YOU HAVE BEEN PUT ON HOLD, THIS MUST BE VERY
FRUSTRATING...PLEASE KEEP COMING TO THE BOARD, I KNOW IT WILL BE
A STRONG TO YOU....
GOD BLESS....
JOHANNA |
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Expert
Posts: 2039
Location: Springfield, Mo. | Ramona,
So sorry to hear that Hannah's surgery was cancelled. We will be praying that she will be rescheduled soon. Hang in there I know it is so discouraging to know that your child has to wait but we will pray that they get her in real soon.  |
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Posts: 3970
Location: Plymouth, Pennsylvania | TRACE.
I THINK THESE ARE THE POST YOU GUYS ARE LOOKING FOR.....
GOD BLESS,
JOHANNA |
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| so sorry to here that you have been put on hold
i am sure that the children do not suffer in these short waits but the parents sure do .
we are very lucky that oli has been on the waiting list for only a week and our first op date is projected for april .
i am having such problems sleeping right now and after seeing my gp today she puts it down to the worry about oli's opp and i guess she is right
it is so reasuring to read all the good stories here . one thing that surprised me was where people are saying that the op is done through te back .i dont know why but i thought that it would be done through his chest does anyone know if this is ever done . neither myself or mandy can remmbemr what Mr Freeman said and we are not sure if he said it or we just assumed it .
thanks again to everyone for their kindness is sharing theor stories here.
steve |
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Location: Wales (UK) | Hi steve and Mandy
Did you get my HUGE email the other night?
It is hardly suprising that you are struggling to sleep. I went to my Drs and they gave me diazapam before the operation as I was just so knackered with the worry and organisation of it all!
I have never heard of the surgery being done through the chest, I am sure herre in the UK they will be far less adventurous anyway as this whole VEPTR thing is so new, they will stick to the basics.
Is Dr Freeman based in Nottingham?
Has he had his MRI and CT scans done yet?
Take care and whilst seeing your Dr try and find out if you have paediatric nursing teams who will visit your home after the operation. We have a nurse called Kevin who is fab. He checks Reubens wound etc without having the trauma of Reuben going back to the hospital too many times. More than that though is the fact that it is nice to have support.
Has Oli got a Health Visitor? They too should be supporting you through this.
Of course, we will support you all in any which way that we can.
Take care all of you
Trace |
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Elite Veteran
Posts: 1076
Location: Silver Lake, Kansas | i too have never heard of them doing the surgery through the chest.
shawn |
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Location: Wales (UK) | As soon as you get an email address let me know so that we can keep in touch.
How is Chloe doing? It cheers me to read that she is a strong little girl. I think this stands them in good stead for the operation and of course the recovery after it. Although Chloe is a unique young lady, I am sure she will astound you, and surely does everyday.
Are they thinking to bring the Prof over for Chloe as she is such a unique and special little lady? If he doesn't come over I am sure he will advise the medics.
Reuben's CT and MRI scans went to Prof Campbell and he instructed Birmingham what and how to do the VEPTR. I guess every child is an individual and we took huge comfort form the fact that The Prof had advised them on our little champ.
Take care and if you need anything give me a phone 01597 822930 or email me at home on [email protected], or post on here.
take care
trace |
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| thanks trace but sadly no i did not get your e mail
my addy is [email protected]
if by chance you still have it would you please re send it would help so much
the facts you raised
yes mr freeman is based at the QMC in nottingham
oli does have a health visitor but she does not even know about his condition perhaps we should take him to see her .
we also know nothing about any follow up nrsing .
he has not had his mri or ct scan yet but we were told at last weeks appointment they would let us know when there was an apointment for him so we are just waiting .
the doctor gave me some sleep routine tips to try as we both would rather stay off the tablets for as long as possible
thanks for your prompt reply and for the help you are giving us in this vey very dificult time
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Location: Wales (UK) | How are you all doing after news that the surgery is being put on hold. It must be very hard for you, and very frustrating. We had to fight for Reuben to have his scans. We got our local MP involved and the waiting time moved from 6 months to 3 weeks!!!! I know the cases are different, but if you have a local MP he may be able to help you.
When is your baby due? Are you feeling okay?
Take care, as with you all you know my number and my email if you need anything or just fancy a natter or rant!!!!!
Trace |
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| thanks for that advise trace
i have just phoned oli's health visitor and made an apointment for her to come out and see us-but it is 2 weeks before she can come but at least she will be getting involved.
steve |
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| hi steve and mandy like you i am having sleepless nights worrying about chloe's op even though we dont have a date yet. only this morning i was sat crying for nearly 2 hours whilst talking about chloe's op to her nurse. (we have a nurse come in because chloe's syndrome is life limmiting). We have been told that they will go through her chest, iam a bit confused because the procedure is done from the back thats my understanding anyway.
tina |
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| hi trace , chloe's doing fine at the moment we still hav'nt got a date yet.yes they are hoping to bring prof over because of her complex needs also chloe is on warfarin to thin her blood because of her mechanical valve and her heart is'nt as strong as they would like it to be. she has to come of her warfarin when she has op but they have to be careful she does'nt get a blood clot. we have been told she only has a 40% chance of making it through the op i have done nothing but cry this morning i get like that now and again people say i am a strong person but i feel like im falling apart, i also have a 23yr old son with learning difficulties who has diabetis so he is hard work as well. it is so good to be able to turn pc on and talk to someone thankyou. from tina |
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| tina williams - 2005-02-15 3:30 PM
hi steve and mandy like you i am having sleepless nights worrying about chloe's op even though we dont have a date yet. only this morning i was sat crying for nearly 2 hours whilst talking about chloe's op to her nurse. (we have a nurse come in because chloe's syndrome is life limmiting). We have been told that they will go through her chest, iam a bit confused because the procedure is done from the back thats my understanding anyway.
tina
tina i just want to give you a big hug
it is just how i am i know fella arnt supposed to cry but hey who cares
we have had no support apart from friends and the good people on here and it is so hard . just going to the doctors today i was quite upset just talking to her about oli's opperation .
i too thought they were going through his chest but we will ask next time we see Mr Freeman --even though at the moment we do not have any more appointments
just hoping that they can sort you a date out very soon if it helps we are thinking about chloe but you too
love steve + mandy |
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| trace i forgot to give email address this is keith's cant seem to get on mine for some reason told you wasnt much good with computers. [email protected] ( I THINK THATS RIGHT) Tina. |
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| davies - 2005-02-15 11:50 AM
Hi steve and Mandy
Did you get my HUGE email the other night?
It is hardly suprising that you are struggling to sleep. I went to my Drs and they gave me diazapam before the operation as I was just so knackered with the worry and organisation of it all!
I have never heard of the surgery being done through the chest, I am sure herre in the UK they will be far less adventurous anyway as this whole VEPTR thing is so new, they will stick to the basics.
Is Dr Freeman based in Nottingham?
Has he had his MRI and CT scans done yet?
Take care and whilst seeing your Dr try and find out if you have paediatric nursing teams who will visit your home after the operation. We have a nurse called Kevin who is fab. He checks Reubens wound etc without having the trauma of Reuben going back to the hospital too many times. More than that though is the fact that it is nice to have support.
Has Oli got a Health Visitor? They too should be supporting you through this.
Of course, we will support you all in any which way that we can.
Take care all of you
Trace :handshake:
just a thought
i have a very selective filter so please if you can send it again make the subject line veptr i get so much spam i have lots of key words deleted from the server so that may well have happened
steve |
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Member
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| hi steve and mandy just had chloe's date for op. it is 21st feb yes next monday bit of a shock at moment. just trying to speak to her brothers and sisters at moment catch up later. from tina |
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Regular
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| keith williams - 2005-02-16 1:04 PM
hi steve and mandy just had chloe's date for op. it is 21st feb yes next monday bit of a shock at moment. just trying to speak to her brothers and sisters at moment catch up later. from tina
so glad to here that news it is great
hoping everything goes really we ll for you
steve |
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| hello trace got appointment through this morning. chloe has to go in on monday to come off her warfarin and her op will prob be done thursday the 24 feb. i am so scared all ihave done is cry and wonder if iam doing the right thing by her. like i said before they gave chloe only a 40% chance of pulling through. we were hoping to take her to meet the tweenies with make a wish fondation but her appointment has come so soon. so i hope you will pray for our little princess she needs all the help she can get. from tina if anyone else reads this will you please pray for her too. |
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| sure will keith
we were so excited when we heard it had come through so soon , i said to mandy isnt it funny we were happy for something to happen to someone we did not even know about a few days ago but i think it shows just how much we are all there for each other .
even though they say chloe has a 40% chance of coming through they are bound to tell you on the low side to cover them selves and what is her chance without the opperation ?they would not even concider doing it if was not the right thing
you have shown by your postings that you are both devoted to her and are doing your very best for her
please contact make a wish to see if there is anything they can do before her opp you never know they may be able to do something ever if it is something different
are all in our thoughts
steve
Edited by candyman 2005-02-16 11:19 AM
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| hi eveyone, as i said chloe has to go into hospital on monday 21st feb, she has to be taken off her warfarin and put on hepron iv. her surgery will take place on friday25th and prof cambell wont be there he could'nt make the day that our own dr booked the theatre. they have booked it for the whole day so as you can imagine we are very worried and upset that he couldnt make it, prof being the top dr gave her a better chance that was our own dr thoughts as well. we have told chloe what is happening to a certain extent she does'nt really understand she thinks that it is prob just another one of her routine stays that has become part of her life. we have had lots of support from family and friends and also different agencies(chloe's different care workers) and of course lots of veptr families but it is still hard and upseting but like everyone keeps saying she pulled through open heart surgery at only 8months old then they gave us a 50% chance and with her syndrome they didnt expect her to pass a year old and now she is 4 going on 24. im rambling now arent i so i will get off now and try to keep you all informed . bye avery tired and emotional chloe's mummy x |
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| just to let you know that we are of for a few days break now so will not be able to send any messages untill monday or tuesday
but we will be thinking of you and send chloe all our love and thoughts
steve |
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Location: Wales (UK) | I just want you to know, that we are all thinking of you over the next few days. I can only half imagine how you must be feeling, but I want you to know we are hear if you need ANYTHING.
trace, Jonny and Reuben |
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| Hi everyone, thanks for your messages after Hannah's surgery was postponed. Sorry have not been on for a while, just catching up now.
Keith and Tina, I am pleased that you have a date for Chloe's surgery but I can really imagine how you are both feeling right now, especially as Hannah's surgery was scheduled for 21st Feb. I know how worrying it is but it sounds like she is a fighter and strong little girl who has pulled through so much already, so hopefully all will be well. I do think the Dr's give you the worst information so they cover all angles. I know when we had Hannah's pre op checks and our consultant was explaining what could go wrong (things like paralysis and breathing probs, not surviving the procedure etc), I got really upset thinking that she might go from being a healthy little girl to not being able to move or whatever, but you can't think like that too much or it would drive you mad. Anyway, if you get this message before her op, please know we are thinking about you, and sending our love and best wishes - we really really hope all goes well and that Chloe pulls through and recovers well.
I also had sleeping problems (particularly when things were leading up to Hannah's op), I would wake in the night and lie there for ages just churning things over in my mind. Then I would end up being really tired and emotional the next day and taking it out on girls (which was so unfair and made me incredibly guilty). However things improved once hannah's op was postponed but I know things will be same again once we have new date. I hope Steve, that you and Mandy have been able to get better sleep now and that the sleep tips worked.
Trace, thanks for info re MP. My mum also had same idea. How did you contact yours and what did you say? We are under Nuffield Orthorpaedic Centre in Oxford, but we live near Bracknell in Berkshire so would assume we contact local one?
I know someone said about having really good support from family and friends which is the same for us, but one thing I have found is that no matter how much they can empathise with you, none of them really understand what it feels like to be going through this. I am so glad to have found this website because everything everyone has said, has been exactly how we have felt, been feeling etc. and it doesn't feel like we are quite so alone.
Baby has not arrived yet, but counting down the days (10 to go)!
Anyway, sorry for my very long winded message.
Take care all,
Ramona |
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| thanks for the message ramona , so sorry you have to wait but hopefully it will give you time to settle with the baby.
my sleep is slightly better thansk for asking .
if you do contact your MP contact the one for the place where you live not where the hospital is . we contacted ours some years ago on a totaly different matter , concerning the inland revenue, and because he was an mp he got action we just never could have so im sure he may be able to help you
steve |
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| hello steve and mandy and little oliver. ive just put anew post on pc. chloes op posponed. iwont explain again here as it was along letter. how are you all doing? have you had date yet? how is oliver doing? speak to you soon tina x |
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| hi trace and family ive put a new post on pc chloes op posponed iwont explain again as it was a very long letter. speak to you soon love from tina x |
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| keith williams - 2005-02-24 12:04 PM
hello steve and mandy and little oliver. ive just put anew post on pc. chloes op posponed. iwont explain again here as it was along letter. how are you all doing? have you had date yet? how is oliver doing? speak to you soon tina x
hi tina
so glad you told us we have been talking about her every day and worrying at least now we know she is ok , does the delay agrivate her condition?
oli is great thanks we have not heard anything at all from the hospital i sent an e mail to his surgeon but got no reply
steve |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | STEVE AND MANDY:
I HAVE GOT TO TELL YOU, THOSE BLUE EYES OF
OLIVERS ARE POSSITIVELY BEAUTIFUL....
HE IS A BEAUTIFUL BOY....
GOD BLESS.... |
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Expert
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Location: Greenbush, Minnesota | Oh my ~
I was just going to post that Johanna!
He is a cutie!! 
Janita |
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| Hi i'm also in the uk and new to this site Samuel is 18mths old and currenlty under the care of Staffs and birmingham but birmingham is only for plastics at present.
Suzanne |
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| hi and welcome
sorry ive not been around for a long time
oliver is now 26 months his date is penciled in for 4th october
will get back when when we get it confirmed
steve
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Regular
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| oliver goes in tomorrow for his pre op tests
we have been told to be prepared for a full day
have been told today that olis opp is going ahead on the 4th october providing that there is still a bed availiable on that date
we are not coping too well mentally
we have a daughter who is very mentally and phyically disabled and as we want to be there for oli we asked social services if they could arange some respite care for her but we were refused because we dont ask for it regualrly
but my little sister has come to our rescue and is looking after her for 2 week while oli is in hospital --she is a brave lady as she has never looked after a disabled kid before !!!!!!!
so we can rest a little now we know we can focus 100% on oli while he needs us and still be happy that heather is being looked after well
steve
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Expert
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Location: Springfield, Mo. | Please know that we will be praying for your family in Oli's upcomng surgery. Hugs sent your way.
Tammy |
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| hi steve and mandy, i will be thinking of you and oli on the 4th oct. i pray everything goes well and that oli makes a speedy recovery. be strong for him, i know thats easier said than done. thankgod for your sister looking after your girl now you can put all your energy in getting oli through his op. i have missed our chats but dont come on pc that often now still miss chloe like mad its 5 months next week since shes been gone. anyway you both take care of eachother and take care of your precius little oli. lots of love tina.xxx |
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Elite Veteran
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Location: Chittenden County Vermont | Prayers for everything going well for your family and Olli. He looks like a spitfire, he will kick those docs butts I am sure.
Take care of yourselves so you can care for him.
Big hugs
Susanne |
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| tina williams chloes - 2005-09-29 10:52 PM
hi Steve and Mandy, I will be thinking of you and oli on the 4th Oct. I pray everything goes well and that oli makes a speedy recovery. be strong for him, I know that's easier said than done. thank god for your sister looking after your girl now you can put all your energy in getting oli through his op. I have missed our chats but don't come on PC that often now still miss Chloe like mad its 5 months next week since she's been gone. anyway you both take care of each other and take care of your precious little oli. lots of love Tina
thanks so much with all you have been put through it means so much that you took the time to write to us
I must admit to re reading most of chloes threads just before we went away
we felt so close even though we never had the pleasure of meeting her .
you give us strength to keep going with your strength
thanks again it was so good to hear from you again
love
Steve |
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| hi everyone
we are back from my sisters
heather is having a ball being treated like a princess
had a very quick journey home 3 1/2 hours instead of the normal 5 hours i think we just wanted to get back home it was so strange travelling with out heather in the van
lisa took everythnig in her stride like she had been caring for her for years .
will get back to you when we have taken oli in want to use this time from now for playing
steve |
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| Davies - 2005-02-11 6:16 AM
I cant believe you are under Brum too. Mr Marks is great he has such a wealth of knowledge and I like his straight talking too!
Have you been to the Children's hospital yet? That where they will do the operation. I guess you see Marks at the Woodlands.
Hi. I'm 14 and I've recently had 3 operations under Mr marks, Mr spilbury and Mr Thompson. Ur right about Marks having a great wealth of knowledge but unfortunately for me he decided not to use it. I have thoracic-kypho scoliosis since birth (disability has run in my family with scoliosis, heart probs, muscular probs and faulty nervous systems).
My Story
July 2004: I'm told that I have a 55 degree curvature and that it was dramatically increasing. "More than likely, you're going to need an operation to fix it" Is what I was told. Not too much of a shock 'cause I knew it was coming
21st November 2004: I get a letter confirming my operation on the 28th November. Every year, Marks Spilsbury And Thompson take 6-7 people to London's Cromwell Hospital (private hospital but my op was nhs). I was "lucky" enough that someone fell ill and I took their place.
27th November 2004: Drive all the way to London (from brum) and admitted at cromwell. The hospital was VERY impressive to say the least.
28th November 2004: Spilsbury And Thompson operate on me from my left side. Before they started they told my mum and dad not to interrupt them by phoning the operating theatre. halfway through the estimated surgery time, my parents get a phone call from Marks saying that he wanted to speak to them. My parents finished their prayers and went to see him. He told my parents that Spilsbury and Thompson had placed a clamp on a blood vessel and as an unexpected result my brain stopped sending a signal down my spinal cord. my parents were faced with the choice of either telling them to continue and risk me being paralysed or diffusing my spine and continuing at a later date. my parents chose the latter.
8th December 2004: this time Marks and Spilsbury operate on me from the back. the procedure was a success. the had opened me up and kitted me out with 2 metal rods and 6 screws (worth over 25,000 GPB). These two operations were done at the Cromwell Hospital In knightsbridge, London.
2 days later they moved me back to Royal Orthopaedic (Woodlands). I was there for a while and had to go through the usual recovery stuff like getting up first time and wearing a spinal brace etc. Then I was discharged but with limitations. I wasn't able to do much apart from walk 1-2 hours a day.
5-10th May 2005: I begin to feel a nub of something sticking out my back, near to where the metal rods finish. I went to get an x-ray done and they saw that the lower 3 screws were coming out of my spine. They call me back in for an emergency operation.
16th May 2005: I go for my 3rd operation. this time they made the rods longer and replaced the screws with hooks (now the metal inside me is worth 35,000 GPB). then I had to go to the recovery stuff again.
last year (2005) I couldn't go on a school trip to Drayton Manor theme park but I understood that. this year they still say I cant go because it has to be atleast 18 month from my operation. this got my so mad that I used Photoshop on Marks to vent my anger. below is the original picture of marks followed by my Photoshop edit.
to be honest id say that he's lucky that my version isn't worse. I've had too much homework to do anymore.
sorry for such a long message |
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| please note: where i said May, i meant to type March, sorry |
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| am i the only one to think the picture is in very bad taste
i realise you are upset , i would be too, but i feel you have gone too far
if there are moderators on here perhaps they could remove the post
thanks
steve |
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| sorry i did not realise i was not signed in the comment above was from me
steve |
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| > Am i the only one to think the picture is in very bad taste
> i realise you are upset , i would be too, but i feel you have gone too far
Normally I would agree with you, sure. But I think Dr. Marks can weather the slings and arrows of a 14 year old patient. 
Mr CyanEyed, in the future, how about we try to take the photoshopping down a notch. I'm going to go ahead and remove it just to be safe. You never know, your doctor might be reading here tonight. I'd like to save you an awkward encounter your next meeting. ;-)
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Any UK families?
