18 YEARS ON

For some 18 years old marks a time of celebration, here in the UK its being able to drink, being classed an Adult  but this 18 years on it not about a Birthday but it is about my Son Charlie and he blogs too, you can see there here on Charlies Photos and Me please take a visit,  his new to it and very good, but this is not about his blog either..

18 years ago to this date 24th March my son well (mine and my ex’s) underwent major open heart surgery and one of Londons top Childrens Hospitals called Great Ormond Street Childrens Hospital which i will refer to as GOSH.. 

Charlie and me were already at the hospital, had been since 3.5 weeks old and where we were given the diagnosis of Transposition of the Great Arteries with Ventricle Septal Defect (TGA & VSD you can see more about the condition on one of my pages. please click on the link https://mumandcarer.wordpress.com/congenital-heart-defect/  it saves time on re writing it out all again.. 

At birth we didn’t know anything was wrong at all but as the days went by and things started to go downhill and little signs started to show according to my health Visitor things were not as they should be.. A baby not gaining weight or gain then loose then gain and loose they classed it static weight gain,  well after the dr sent us to the local and the Local sent us to GOSH we were then sent for scans, ex-rays blood tests for blood match.. my baby was diagnosed with a congenital Heart Defect and would need minor surgery today, followed by open heart surgery (which is his anniversary today).. 

We were thrown in the the world of CHD something i had never even heard of until that day..  on the 7th March the day of diagnosis he underwent a small non invasive op.. from that moment i felt my baby had been taken away from me and was being looked after by the nurses and medical world,  I had only had him in my life for 9 months in my tummy and 3 weeks outside in the real world..  the small op was called a balloon septostomy  see the link as to whats involved..  Me however was by now on a cloud looking down below., I felt i was on my own despite being in a hospital on a ward with other heart children and parents,  the little op went well but it was just the beginning of a emotional world.. I got to know one of the mums on the High Dependency Unit who we still stay in contact (well we did till last year when they moved)..

We were sent back to the local hospital to be shown how to tube feed my baby so he could gain weight before the big op.. which was going to be a little earlier than 24 th March but he got sick,  he got rotavirus at the local hospital although we were told at the time that his bowels had gone inside out, ,that was not true by the way, but we were Ambulanced back down to GOSH and partly blue lighted due to traffic..  

Once Back at GOSH tests were done and Rotavirus confirmed so he was only allowed saline an no milk,,  i could do nothing,  so the drs sent me home on orders to Rest and Refresh before op,  although i only managed 24 hours away due to a nasty comment from a old relative of the Ex’s.. 

The Op day arrived.. my sons Father was with me and it was a awful day,, although i never thought for a moment we would loose him,, never occurred to me and 8 hours later All had been a success..  

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We were shown to the CICU (cardiac Intensive Care Unit ) to where Charlie was.. although there was a slight delay as a poor 8 year old had died, and suddenly your back in a very horried world of what can happen.. luckily for us Charlie had done well and was in CICU you for 48 hours (we were told to expect 10 days in there ) he was then monitored on HDU for less than 24 hours before going on the ward to improve before being allowed home and this happened on the 1st April so in less that 10 days of Open Heart Surgery we/I was on my own.. the Dad just carried on working but had  his own emotions to deal with and to this day he wont speak about it.. 

Mean while I had this tiny little baby with a chest scar to look after,  he has supplements in his milk to help him grow, which then was added to his solids.. he did grow but very slowly but once he turned 8 he was already half way through puberty,  very early for a boy and this was medically halted for 18 months also,, (he did have a op on his willy but as his reading this wont write too much. he had a condition called hypospadius which needed a op at age 3) 

As Charlie grew he was a lovely little kind caring laid back lad and still his as a 18 year old.. 

when Charlie was 18 months old and at GOSH for one of his many check-ups i found a card for a charity called Heartline. It was like a breath of fresh air making contact and realising  you are not alone and there are other parents out there who have children with Heart Defects.. At first the Support was all on the Phone but it was great so speak to somebody who understood, then it became online, in time as i accepted things i became a support work helping others,  but now a days its nearly all online and I am still there but in a much lower profile as my child is much older and no longer a baby and procedures differ as time moves on, but non the less i am still there offering what support i can give, ,so please do take a visit  http://www.heartline.org.uk/..

We have school to deal with which was not easy to start with as this was a time when we realised the enormity of what had happened pre diagnosis and charlie had suffered some oxygen loss and this resulted in mild learning needs,  the list of where he struggles is long but with the right help being in place he has got through Lower, middle and upper mainstream schools and now at college.. 

Over the years he has done power kiting, sailing and rowing

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He has passed 9 GSCE’s at foundation level with a reader and writer, he is a qualified sailor plus as you can see he rowed for 12 months until College and fainting and now High Bp has stopped that now, he did a level 2 agriculture cause and Passed and is now doing a carpentry course.. 

One thing my son has taught me is Never take anything for granted, any decisions you make for them should be for them and not for you..  and despite a persons disability never say they wont be able to this that and the other.. Everyone will find a way in life, they will learn to know what they are good and and will excel in life,  

There is no point in worrying about the WHY’s did this happen cause unless there is a Gene or hereditary link you will not find any answers..

The one Person I always thank is Charlie’s Heart Surgeon,  Marc De Leval  

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I Thank you Marc for saving sons life..  many times over

 

 

 

My Son

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Hey Guys and Gals, 

Now I have mentioned my son before in some past blogs, and as you may or may not have read he was born with a Massive Heart condition and we are approaching 18 years since open heart surgery but that will be for a blog later in a week or so.. But what i did want to say is my son has has suffered with mild learning difficulties since he was about 3 years old.. he has done well with the educational support and help he has received..

But the Purpose of this Blog is to tell you that he has set up his own blog mainly a photo blog where there are tabs to see his photos and there are some posts where i have helped him to write what he wants to say,, 

But please any or my followers can you please pop and have a look at my 18 year old sons first ever blog and like if you wish.. please here is the link http://charliespicsandme.wordpress.com/