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
Thursday, 21 April 2011
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
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