This will be my last day posting for a while.
Ben goes into hospital for his operation tomorrow. The operation is scheduled for tuesday. My place is with Ben, Rebecca and Sam, and I have decided that 365 can go on hold until we are back to normal. Hopefully this will not be too long.
Thank you all for the messages of support over the last few months. I take great strength from Ben's stoicism. He has an old head on young shoulders.
I know that many of you will be thinking of us, and if I can, I will post an update on this shot on tuesday if time and circumstances permit.
Update, Monday night at 10pm.
Thank you all for your messages below and elsewhere. Ben and I are in his hospital room chatting. We've just had a couple of games of chess, honours even. He is chatting to friends on his phone as i type. I have to wake him at 6am for a drink, and then he has to have a pre op bath. He is expected to go to theatre at about 8-30am and the op takes about 4 hours. All being well I expect to update by mid afternoon. Thanks again, 365 has been a very welcome distraction for me this last month or two. Your friendship means a great deal to me.
Update Tuesday 3-30pm
Ben's operation has gone very well. All is good. More of an update later.
Update Tuesday 10-40pm
As mentioned earlier, Ben's op has gone very well.
This was the first time the hospital had done an op like this on a child with Ben's condition and there were many unknowns and risks. Against that backdrop, today could easily have been the worst day of my life. It has turned out to be the best.
We are very lucky that it has gone so well and we have so much to be grateful for. We've gone from the risk of him having a heart attack during the op and needing emergency open heart surgery, to being told it has gone so well that he should be ok for 8-10 years, when he will need a repeat of today. I expect there will be many twists and turns ahead, but for now, we are overjoyed, relieved and very grateful. We expect to be home by the weekend!
We have so much to be thankful for, from the dedication, skill, knowledge and care of the doctors and consultants and nursing staff, to the stoicism and grace with which Ben has carried himself. I have said it before, Ben is an inspiration, he is my hero. He continues to carry himself with such dignity. He is an inspiration to anyone thinking "Why me" or "its not fair".
Thank you for your wishes and for caring. I have taken so much comfort from it, and will never forget the support that you and others on 365 have given us. I appreciate all your messages over the last few months, they have given me so much comfort.
I will end with Ben. I have passed on the messages of support on this photo, and in the private emails I have received. He has nothing but the broadest of smiles on his face when I tell him of all the good luck messages from friends new and old the UK, France (his old headmistress), Australia, South Africa, Canada, Norway, all 4 corners of America, the list goes on
Thank you all,
Sean, Rebecca, Sam and of course, Ben x
Update Wednesday 11.30pm
A very long day since the alarm went off at 6.30am. I was at home with Sam last night so ran him to school and got to hospital at about 8.30am.
I've spent the day with Ben and am just bedding down in a basic parents room having got Ben off to sleep a few minutes ago.
Ben is ok, complaining of some chest pain but we are told that is normal and the nurses are keeping the pain under control easily.
He's had ECG, Echo, X Ray and is on a 24 hour monitor just to check all is ok. All seems good and the docs are pleased with him, and with themselves I think. We cannot thank them enough, they make what I do for a living seem so inadequate and trivial. They have managed my beautiful son through to adulthood it seems. We now think we will see him fulfill his undoubted potential, a thought that brings tears of joy to my face, replacing the fearful, despairing tears of recent days, weeks and months.
Sunday 16th March
Ben was allowed home yesterday after 6 days in hospital.
We have to monitor him closely, and he is back at Glenfield for more tests tomorrow and in 2 weeks time. We have to hope that things will return to normal in his heart, and that the operation is as successful as we all think it has been. For this to happen we need to see the pressure in his right ventricle drop and that will allow the right side of his heart to return to a more normal size, because it has been twice the size it should be.
He has some schoolfriends round for a few hours this afternoon for pizza and XBox, and hopeully will be back at school on tuesday or wednesday. He has to take it easy with exercise for the next few weeks, not least because he has a large and very sore wound site on his thigh where the stent was inserted through his femoral artery.
I am hoping to find a small amount of time today to get out with my camera, all being well.
Best wishes to you all, hope all is well soon!
Best wishes for Ben and a speedy recovery. Please update when you can.
We wish Ben well with his surgery, and hope that he has a good outcome and rapid healing. Our best wishes to you as you support him over the next days.
bounds. Best wishes to you all, it's been quite a journey, happy days Ben.
Hope Ben continues to do well and gets home soon xx
Thank you all so much for your messages of support and encouragement, which have been a great comfort to me and my family. As you can see from above, all is very good for us, and we ar enow getting back to normal. Ben has a long way to go, but we are so happy and relieved to see him home and in good health. I will always remember the support you have all given us. As Ben and I do at bed time every night, closed hand fist bumpy thing for you all.
So very glad it has all gone so well......must be such a weight off all your minds to have this behind you & can look to a good future life of better health for Ben. Wonderful things they do today in the medical world & our NHS is a wonder!
Just having come back from NZ where I had to pay although I must say my treatment was amazing & prompt, I still think in general we are the envy of the world.
All good wishes to Ben...he is blessed with such a loving family & you are a great support to each other.
Thank you one and all. Ben has come through his exercise test unscathed today so is back to school tomorrow. We get the detailed results in 2 weeks, and will also know a lot more about how his heart is settling down then. @rvwalker I remember Linda's operation. I think it was about this time last year, maybe a little later? I think you may tell me though that it was 2 years ago!! We actually took some comfort from Linda being so well ahead of Ben's operation.
Once again I have failed to stick with 365... but I just checked back in to see that Ben's operation went well. Really pleased to hear this and hope his recovery goes from strength to strength :)