It's been nearly a year since i last updated my blog but only becouse we have had no news on Charlie's op...but now we have.
Charlie's next ohs will be on the 4th April 12 with pre admission on the 3rd. The surgeon from Boston Children's hospital will be flying over to carry out the op along with surgeon Victor Tsang from GOSH.
We were expecting a date but as the months rolled on and we still had no confirmation of a date it has come as a bit of a shock, this is another BIG op hence why GOSH have a surgeon from America to do it.
We won't be telling Charlie till very near the time as he is will worry and we don't want to scare him. At the moment he is gaining weight though he still only weighs about 30lb, he is on maxijule for his weight and asprin to keep his veins clear, his sats are dropping slowley and are now at 81/82%.
Charlie is now at school though he isn't a big fan of it bless him but once he is there he seems to be fine.
I will keep this blog upto date when there is something to tell you, i'm hoping this will be some kind of therapy for me while we are in hospital trying to cope with all the stress and worry.
Please feel free to comment.
Steve
Friday, 9 March 2012
Thursday, 21 April 2011
Charlie is on the surgery waiting list
The other day we recieved a letter from GOSH telling us that they have a plan for Charlie's next surgery. They have been in contact with the Children's hospital in Boston America and have asked for their top surgeon to come over and perform the surgery with Charlie's surgeon.
They are hoping to move the Aortic valve to the position of the pulamary valve which was replaced with a cardiac conduit.
The letter stated that they will have Charlie down for pre ammittance the day before surgery to carry out tests and if they were confident and able to perform surgery, they will if nbot we will be sent home.
Yesterday we recieved another letter saying that Charlie was now on the surgery waiting list and asked for dates that he may not be available i.e, holidays.
This has come as a shock to us as we thought or more like hoping, that it would be months before surgery, it still could be but now he is on the list it could be anytime.
All my fears and anxiety are coming back and im scared for Charlie as this will be a huge op for him, GOSH have not done this op before hence asking an American surgeon to come over but im not even sure he has done it before either, they are in talks with eachother but with the letter stating that they may not be confident enough to do it frightens me and what will they do if thay can't do it?
I', very worried and scared
Steve
They are hoping to move the Aortic valve to the position of the pulamary valve which was replaced with a cardiac conduit.
The letter stated that they will have Charlie down for pre ammittance the day before surgery to carry out tests and if they were confident and able to perform surgery, they will if nbot we will be sent home.
Yesterday we recieved another letter saying that Charlie was now on the surgery waiting list and asked for dates that he may not be available i.e, holidays.
This has come as a shock to us as we thought or more like hoping, that it would be months before surgery, it still could be but now he is on the list it could be anytime.
All my fears and anxiety are coming back and im scared for Charlie as this will be a huge op for him, GOSH have not done this op before hence asking an American surgeon to come over but im not even sure he has done it before either, they are in talks with eachother but with the letter stating that they may not be confident enough to do it frightens me and what will they do if thay can't do it?
I', very worried and scared
Steve
Monday, 24 January 2011
We are back!
Welcome everyone, been such a long time since i last posted so i thought i'd better update you all.
Well the sponsored cycle ride came and went with much fun and soreness but lots of money was raised infact, over £1500 was raised but unfortunatly we are still waiting to send the cheque to GOSH as we haven't recieved all the money yet so the £1500 is not yet confirmed and don't forget, the Anthony Nolan trust will recieve some funds too!.
As for Charlie, well he is growing up fast and really becoming a little "grown up". Charlie's MRI results still have not come back to us at least in detail anyway, we recieved a letter from GOSH back in December saying they were not sure what to do so they will contact the childrens hospital in Boston America to see if they can offer advice. That is scarey really but if it is what they have to do then so be it, we are expecting to hear something very soon but at least nothing is urgent right now. Charlie is still very light in weight infact he weighs only 26lb 7 oz at 4 years old and thats despite drinking very high calorie drinks but then he doesn'nt a;ways eat alot and he is always on the go.
A great Christmas was had by all, Charlie was spoilt rotten with lots of toys and love but he keeps craving and asking for kids magazines, i wouldn't mind so much but he only wants the toys inside and at £3/4 a time its not cheap!.
I have moved in with Sarah and Charlie stayes over every weekend which he loves, he follows Sarah around like a lost puppy bless him.
Anyway, i need to go, il try and keep this upto date as often as i can.
Oh, please someone comment or do something on here so i know im not writing this for nothing........please.
Steve
Well the sponsored cycle ride came and went with much fun and soreness but lots of money was raised infact, over £1500 was raised but unfortunatly we are still waiting to send the cheque to GOSH as we haven't recieved all the money yet so the £1500 is not yet confirmed and don't forget, the Anthony Nolan trust will recieve some funds too!.
As for Charlie, well he is growing up fast and really becoming a little "grown up". Charlie's MRI results still have not come back to us at least in detail anyway, we recieved a letter from GOSH back in December saying they were not sure what to do so they will contact the childrens hospital in Boston America to see if they can offer advice. That is scarey really but if it is what they have to do then so be it, we are expecting to hear something very soon but at least nothing is urgent right now. Charlie is still very light in weight infact he weighs only 26lb 7 oz at 4 years old and thats despite drinking very high calorie drinks but then he doesn'nt a;ways eat alot and he is always on the go.
A great Christmas was had by all, Charlie was spoilt rotten with lots of toys and love but he keeps craving and asking for kids magazines, i wouldn't mind so much but he only wants the toys inside and at £3/4 a time its not cheap!.
I have moved in with Sarah and Charlie stayes over every weekend which he loves, he follows Sarah around like a lost puppy bless him.
Anyway, i need to go, il try and keep this upto date as often as i can.
Oh, please someone comment or do something on here so i know im not writing this for nothing........please.
Steve
Thursday, 5 August 2010
Sponsored cycle ride nearly here!
With only 3 days to go before we do our sponsored cycle ride of 60 miles we are eager and ready to go, we have been training hard for the last couple of months and sponsore money has been pouring in.
Our initial target of £600 has been smashed with a reckoning of approx £1500 to be raised!!.
We have had a few minor set backs with training as Paul "broke" his bike but he now has a new one so lets hope he behaves himself with this one.
Charlie is doing "ok" at the moment though we are still waiting for the MRI results so we are no closer to knowing when his next OHS is.
If you would like to sponsor us you can do so at http://www.justgiving.com/CharlieWoodheartappeal
You can also check out our "new look" website at www.charliewoodheartappeal.org.uk
Wish us luck for Sunday, we maybe eager and ready but a little luck will go a long way so cheer us on if you see us and make it more worth while by sponsoring us.
Steve
Our initial target of £600 has been smashed with a reckoning of approx £1500 to be raised!!.
We have had a few minor set backs with training as Paul "broke" his bike but he now has a new one so lets hope he behaves himself with this one.
Charlie is doing "ok" at the moment though we are still waiting for the MRI results so we are no closer to knowing when his next OHS is.
If you would like to sponsor us you can do so at http://www.justgiving.com/CharlieWoodheartappeal
You can also check out our "new look" website at www.charliewoodheartappeal.org.uk
Wish us luck for Sunday, we maybe eager and ready but a little luck will go a long way so cheer us on if you see us and make it more worth while by sponsoring us.
Steve
Wednesday, 21 July 2010
Disaster aproaching?
Well, Pauls' new bike is going back to the shop for repairs!, the forks are bent meaning the bike can not be ridden. Lets hope they can repair it or replace the bike ready for the 8th August or he will be running behind us....lol.
On a much better note, Charlie had his sats checked again today and they are 85%, thats 6% up from last week, the nurse is very pleased with him and is thinking that lasts weeks check was just a "blip". No results back yet from GOSH ref Charlie's MRI etc but it shouldn't be to long a wait now.
Don't forget to check out our "new look" website! http://www.charliewoodheartappeal.org.uk/ , there will be plenty of new pics of Charlie to view plus maybe just maybe some very exciting news coming sometime soon so keep checking back for updates.
Also, if you want to sponsor us for our 60 mile cycle ride you can do so by visiting our just giving website at www.justgiving.com/CharlieWoodheartappeal
On a much better note, Charlie had his sats checked again today and they are 85%, thats 6% up from last week, the nurse is very pleased with him and is thinking that lasts weeks check was just a "blip". No results back yet from GOSH ref Charlie's MRI etc but it shouldn't be to long a wait now.
Don't forget to check out our "new look" website! http://www.charliewoodheartappeal.org.uk/ , there will be plenty of new pics of Charlie to view plus maybe just maybe some very exciting news coming sometime soon so keep checking back for updates.
Also, if you want to sponsor us for our 60 mile cycle ride you can do so by visiting our just giving website at www.justgiving.com/CharlieWoodheartappeal
Thursday, 15 July 2010
Charlie's Sats
Charlie had his saturation levels checked yesterday (oxygen levels in his blood), they have dropped again to 79%, the nurese has said she will check them again next week rather than in 3 weeks time as usuall, she is concerned and says he looks very blue.
We know another ohs is coming soon but as his sats drop lower and lower the sooner the op is and it's not what we really wnat, would be good to have it now if we knew the outcome would be positive but as we don't later the better!. On a more positive note, Charlie has gained 10 oz!.
Steve
We know another ohs is coming soon but as his sats drop lower and lower the sooner the op is and it's not what we really wnat, would be good to have it now if we knew the outcome would be positive but as we don't later the better!. On a more positive note, Charlie has gained 10 oz!.
Steve
Tuesday, 13 July 2010
Fantastic day at Silverstone
We had a fab day at Silverstone collecting money for GOSH, it was hard work asking people to donate and the heat was HOT HOT HOT!.We started collecting at 8:30 till about 11:30 and had a short break then for another hour till lunch, we then watched the race just by the pit lane exit at the front. Just before the race finshed we headed to the eating areas and started collecting again till 4 pm.Most people were very happy to donate though there was the odd one or two that took offence but in total, Sarah and i collected £529!!, some woman even asked Sarah to lift her top and she would donate £100, sadly she didnt lol.We were very tired when we left, our legs were aching and Sarah's legs were burnt cos of the sun but it was well worth it as it was very rewarding to raise so much.One woman collected nearly £600 just by herself!!, we don't know how much was collected in total but it's A LOT!.It was also good to see some of the patients too, they got to go to the pits and meet some of the drivers, there was one little boy wearing a Mclaren drivers suit, his mum kept asking him to take it off as it was so hot but he said "no, people will think im a driver" lol.
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