You must understand when i come back to this blog, i am struggling with my day. Today i have felt tears well up twice, not for no reason,the first time today i was speaking to a friend, just catching up about the kids and she told me she reads my blog and keeps an eye out for me on FB, but she doesn't know what to say to me on there....she is not the first person to make that comment and i am sure she wont be the last....what do you say to a person when they have faced the fact their youngest child is ill, you can do the pleasantries etc, but as a caring human being you know that you would be suffering such heart ache if you were faced with it you wouldn't know what you wanted to hear.
The second time i felt tears well up was talking about a lovely friend who passed away recently. She was only 45 and very vibrant with a real passion for life, she only found out she was ill on the 21st October 2011 and left us on the 29th November 2011, she touch lots of peoples lives in a positive way...for me it was the great support she has given to me and my family over the past 12 months. She was the only person brave enough to call me when i hit rock bottom (the time i had to accept Billy may die) again this was a sobbing and snorting conversation, but she listened, she empathised, but best of all she made me laugh by the end of that call. She kept in touch even when she was on holiday, i should explain this lady was Billy's head teacher, i knew her only via school and through being on the governing body at the school.
Sam Hurst early departure has left a large hole in the school and local community, i don't think we will ever forget her..i know i won't.
Back to my story of Billy Bones (the name Bones came from Sam Hurst and just stuck with most people including medical staff)....
Billy pulled through ICU, he pulled through HDU, we spent 8 long weeks with the cardiac team on ward 12 in BCH, who saw us at our lowest, they gave us hugs when we had low days, they laughed with us when we had funny moments with Billy, they celebrated with us when we had minor medical victories (such as achieving good blood results). They are still happy to see us when we go back for check ups, they always give Billy big hugs (much to his disgust).
So how is Billy now....
We are on a good roll at the minute, we have been out of hospital for 2 months, Billy's acsities (fluid filled tummy) is very low, his blood results have all been good so far.
Billy still has an NG tube in which he receives a milk feed through, this contains high concentrates of carbs, proteins, vitamins, electrolytes and minerals and 1800 calories a day, Billy has put fat on, but lost weight....bizarre i know and i wish that worked the same way for me, the weight on his body was fluid weight he has no fat left on his body back in August. However as the fats that do Billy's body harm have been removed out of his diet his body can now absorb the other goodies so he is now growing and putting fat on.
There is a lot more science to it than that, but to explain more you would realised just what a medical bore i can be. But he is my son and its my job to know it all.
We have no other plastic line in his body, which is great news in my world as many sufferers live with central lines for years.
We have a more than generous drug regime to follow 3 times a day, but this is not an issue as he is at home not in the hospital.
Billy has gone back to school for 2 hours a day, which i struggle with, we all know kids are just walking germ greenhouses and with Billy being immune compromised, it just gives me a bit of worry each day about what will happen, but Chris and I have said all along there is no point getting him to a level of good health not to let him live his life fully.....but!!!
I will get there i am sure and i will get there in letting the cotton wool relax a bit.
One thing i do find a bother is people staring at Billy as he has an NG tube in and do you know what it is the bloody adults who are the worst for it, you would think they would know better.
Despite everything that Billy has been through and the heart ache we have had this past 12 months, he is a happy bean, he puts up with blood tests and daily heparin (blood thinner) injections, he still bounces around like a complete loon and best of all he makes us laugh with his cheeky comments.
There are lots of signs, postcards, bumper stickers that say one life live it, one life enjoy it, until you are face to face with death you really just don't get it, i know i certainly didn't and if Billy had been sick and made a full recovery, i would have become complacent about it again, but we sit it an odd position with Billy, while he is well ( apart from a cold) now, his disease remains incurable and life threatening and to put on top of that his heart problem is more than likely to come back and he will require more open heart surgery so again another toe still placed on the reapers doorstep.
There are days when the thought of this gets to much, i have a sneaky weep, then suck it up and carry on cos life is for living so that's what i going to do...one day at a time (Sue).xxxxx
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