Once upon a time, not so very long ago........

Little Leon was born with a poorly heart. This made his Mummy and Daddy sad and they decided to search for a special friend who would keep Little Leon company and look after him while he was in hospital.............

The Adventure begins..............

Wednesday, 27 June 2012

Little Leon's Heart Birthday Today!

Today is exactly a year since Little Leon had his surgery!

On Sunday he celebrated with his Mummy and Daddy, Grammas and Grandads, not to mention his fairy god mother and her boy Lil T! Cake and games, a blue heart shaped ballon and being thrown in the air by Uncle Tony! What a day!

Mummy found a poem on a heart...

Dance as though no one is watching you.
Love as though you have never been hurt before.
Sing as though no one can hear you.
Live as though heaven is on earth.

By Souza
Little Leon says he is going to hang it where everyone can see it!

He is currently worn out after a long day of cuteness and will get Mummy to post again soon, now she can do it from her phone :)

Beeg hugs

Leon xxxxx

Monday, 25 June 2012

What a Year....

What a year….

Well. This time last year I was about to board the roller coaster and embark on the longest 24 hours of my life.

We had Taken Little Leon into LGI onto Ward 10 ready for his Heart Op. He had started to decline quite rapidly in the previous few weeks, and the surgery that they had hoped could wait until he was 18 months old had been brought forward, bless him he was only 7 months old. Leon settled in accompanied by the erstwhile Dr Noel Bear, who would stay be his side all the way through.

 He had his Milk and settled down for the night. Helen would stay the night with him, I went home (I’m not good in hospitals at the best of times) to try and get some sleep, yeah right, that happened, ( Not!). I doubt if Helen got any sleep either, but the night passed. I got to the LGI Early so I could give Leon a bath, don’t know why, it just seemed the thing to do. 8.00 came and time to take Leon down to theatre, they sent a trolley for him, but I was determined I would carry my Son down.  Off we went, down the corridor, the lift and into the anaesthetic room. I passed Leon over to the team, then, after 8 Months of doing the “man thing”, you now the sort of thing, being strong, logical, philosophical on the outlook (His chances were less than favourable) , I crumbled, wept like a child, all the emotion since his birth and the issues just flooded out. Get a grip man, I thought, but for 10 minutes or so I was gone. Helen by contrast was quite calm & composed, having got herself to the, “well, we’ve done all we can now” stage, so with heavy hearts and the prayers to many different Gods, and hopes and wishes of many people on many continents we waited…

We had decided, that as the op was expected to take 8 – 10 hours, we would get out of the hospital and try and pass the time around Leeds, We went and had breakfast, It was a glorious day, hot, sunny, not a cloud in the sky (could it be an omen!), we went and looked around a few shops, had lunch, then we went to the pictures, I can’t remember what we saw, but it passed the time… We went to eat something, you know the feeling, don’t know what to do, so I’ll eat, eating for eating sake, but it passed the time.

5.00pm came 8 ½ hours in, no phone call yet, best go back and wait, so off to the last refuge of people waiting for others in LGI, Costa Coffee.

6.00pm came and went, more coffee…. The inane chatter of nervousness, poor Helen, I must have driven her mad.

7.00 came 10 ½ hours in, still no news, more coffee….

8.00 came 11 ½ hours in, people, with the best of intent, ringing / texting asking for updates, nothing to tell. Starting to get twitchy…, more coffee..

9.00 came 12 ½ hours in, what’s happening, mind working overtime, telling myself no news is good news, not really believing it..

9.50 the phone call, can we go to PICU the surgeon wants to talk to us… Outside calmish, inside panicking..

We were taken to a room and waited. In came Kevin (Watterson) looking like a man that run a marathon.
It was Challenging he said, Complicated he said, explained what he had done and what had caused the issues, It’s all a bit hazy now, the details ,I was struggling to take it in. “Is he fixed” Helen said desperate for words we could actually comprehend in our frazzled state. ‘Yes’, he said, ‘best I could, He will have issues later on but I’ve done the best I could at this time!’

Leon had literally just come back onto the ward, so we had to wait more, another 45 long , long minutes passed. Then, the sister says do you want to see him, silly question….

There was my boy, pipes, wires, tubes and god only knows what else going in and coming out of him, did we see that, no, all we could see was that the boy was PINK, not the dusky blue we had got used to, but pink, baby pink, normal pink, flesh pink, how good was that!

Now, obviously he was still in a bad way, the old cliché of the next 48hrs is critical still applied, but Leon had got passed the hard bit, He just had to fight now.

We stayed with him a while, but he was heavily sedated, and we were exhausted, so we went home, We only live 20 mins away from the hospital, so could be back as soon as if needed, but we needed rest, and would need our strength when he recovered.

The next day we were back, he’d had a good night, stable across the board, we breathed a sigh of relief. During the day, the deafening silence of PICU only broken by the occasional bleeping of the machines. The nurses, magnificent as ever, never too busy to answer questions and tried to re-assure us at any opportunity. The Surgeons came and went, looking at his notes, checking him, nodding sagely, saying very little, assuring us he was in the best hands. (We knew that already..) It was a long day, we left him again overnight in the safe hands of the nurses.

Now, some people may find it odd that we went home, I was not an easy decision, but to have stayed would have served no purpose, he was sedated, his condition was stable, we lived 20 minutes away if any thing happened, the last thing the nurses needed was a neurotic bloke asking questions all through the night and generally getting in the way, plus it was the right thing to do for US, may not be for everyone, but it was for us.

That Night ( Surgery + 1 day) we got a phone call, my heart sank when they said it was the hospital, but,  Good news, they had taken Leon of the Ventilator (well he’d basically taken himself of it!) the boy was fighting…

Next day we arrived, he was in a space age type cooling bag, he was overheating (after being too cold the previous day) nothing to worry about they said… easy for them to say..  Helen read stories to little Leon, He squeezed her finger, he knew we were there for him, relief all round. He opened his eyes for a little, I could see his pain, I wept…. ( hidden from the mrs of course…) The days were long, the Staff superb, progress slow. Home again….

Surgery + 3, We arrived, Leon was being moved, nearer the door we joked, yes they said, Into a side room.  The privacy was nice, we were reassured by the fact the nursing was not as intensive and that a few machines less were being used, gradually being weaned off the various drugs that he had been on. Mr Watterson came that afternoon. Spent quite a bit of time looking at Leons charts etc, had a long chat with his registrar and the nursing staff , looked up and said “ I think we’re winning” and wandered off. I could have done cartwheels, never has two words meant so much….

Leon tried to cry that day, but his throat was so sore from the Vent tubes all we heard was a little raspy squeak, he looked so fragile laying there. The physio’s came twice a day, hi was retaining fluid on his chest. So he was suctioned out regularly, not pleasant to watch.. The rest of the day came and went, Nurses doing what they do, us feeling helpless, Leon battling on… Home again.

Surgery + 4, Today was to be a good day, Leon was making noises, too much it turned out for PICU, so they evicted him to HDU (Poorly babies make no noise, the Sister told us! And it’s true.)
SO we were moved, Drains, Pacing wires, machinery et al, up to HDU, Nurse Steph on duty, Ouch! As she clobbered me, One on account she said, on account of what? on account of something you’ll do… She knew how to treat me, that’s the beauty of Leeds, The staff, from Cleaner to Surgeon, every one a star.. 
Once we had been moved into ICU I dared to believe that Leon would recover, He was more alert, We got to Hold Him, 4 days without being able to hold your little one is a lifetime it seemed, he still had drains and pacing wires in, so it was a logistical nightmare, but we managed.

Surgery + 5, Still small improvements, today would be the day his pacing wires would be removed, another major step forward, Still too much fluid for comfort, but hey we were making progress. HDU is an odd place, the meeting of Just going & just been, people wearing the mask of uncertaintanty for the future along side people wearing the look of relief that the worst may be over. Friendships made in that place may last forever as we all share a strange unseen bond that few people have.

Surgery +6 Still Drainage issues, but painkillers reduced, Leon is more active, but winces with pain trying to understand what has happened to him, all we can do is hold him on occasion and tell him its ok. The days are still long, but a little brighter, Leon is responding to treatment well and whilst not out of the woods, we can see daylight.

Surgery + 7 Evicted again, turfed out onto the ward, A good sign, Still  got the drains in, but everything else looking good, dare we hope, dare we believe that he will be home soon……

Surgery +8 – 13 The Drains finally removed, regular checks show |Leon to be progressing well. Better that expected they said, better than we could have hoped. After Dr’s round on Day 13, all looks good, “Want to take him home?” oh how sweet that sounded,..

Now, Leon still needs more ops, He had one in February this year and will need more through his life, but the very fact that he has a life to look forward to is testament to the Skill, Care and understanding of the Medical Teams in LGI. To His surgeon Mr Kevin Watterson I owe the life of not only Leon, but also that of my Father whom he operated on over 20 years ago, how can a man repay that debt…. Thank you sounds so inadequate.

We have spent the last year just doing “Stuff” that families with children without a CHD take for granted, We’ve been to the Seaside, for days out, picnics & parties, met knew friends, found out who our real friends were as well!  We have been on Holiday to see friends from far away lands, all that we never knew would be possible a year ago.

I still have anger over the situation, anger that I feel cheated of the first 7 months of Leons life, anger that I was helpless to do anything, anger of “why me.!” These feelings will subside with time, now that we have time that is.  I can’t change the past, but at least I know we have a future now, and will make sure that we make the most of it as a family.

A quick word of thanks to those special people that have been on the ride with us (and continue to be..) Friends Old & new, family,  people who we don’t personally know but have sent messages and good wishes. A special thanks to the guys from the Rugby League Fans Forum (Church View Farm eggs Supporters Prediction League,) who made a magnificent gesture to us for which we were truly humbled, To Steve & Donna Walker, who tragically lost their own son Also called Leon to an undiagnosed heart condition but found the strenghth to carry on and set up a fund to help others in his name, but my own special thanks to Helen, my wife, without whom I would not have survived this year, Love you.XX

Keep watching & listening folks, the ride aint stopped yet and we’d love you to be part of it still…..

Take care,

Don, Helen and most of all Little Leon.

Saturday, 2 June 2012

Little Leons heart friend, Ebony writes poetry!

Little Leon would like to share Ebonys poem, its about being a Child with CHD
Ebony the Poet :D


Right from the very start
I've had a poorly heart

I used to have spells
I used to go blue
My Mum has told me other children do too

... I don't feel so alone in this scary world
I have my loving Mum who has loved me from day one

I have my many Zips..
But NO more blue lips

I sometimes cry I think you all know why..
It scares me to think of surgery again
But I know I will be in safe hands with the Surgeons on Ward 10

I have lots of friends
I run,dance and join in P.E
When I get tired my friends wait for me

The whole CHD world is sometimes cruel
But my school friends think my battle scars are cool..

I think I'm a lucky girl,with many lovely family and friends
I don't know what will happen to me when I get older
But I do know my Mum will always lend a shoulder

She has wiped my tears so many times
She has sat by me night after night
Many of times I've given her a fright

When I think of what I've gone through
I wonder how my Mum felt
When my CHD life cards were dealt

I just want to say and for you all to see
That having CHD has made Me.......ME.

Ebonys Mum, Sue is very very proud of her talent and it made Leons Mummy cry too!   Little Leon and Mummy love this poem, because it really sums up what its like to have CHD when you are young and trying to grow up with all the other pressures and a heart problem as well.   Leon thinks we are going to see more poetry from Ebony, Heart Warrior :) and Poet.

Little Leon and Big Leon, Heart Angel.....

Little Leon has had a wonderful and very moving gift from Steve and Donna Walker, whose son Leon sadly passed away and became a very special Heart Angel in March 2009.

(Big) Leon was a very keen rugby player and was involved with the Salford City Reds,  before joining Wakefield Trinity Wildcats senior acadamy team in 2008.

Sadly Big Leon collapsed during a match in March 2009 with a rare heart condition which had gone undetected.  He died playing the game he loved, his family and friends miss him very much.  Little Leons Mummy has a wishing candle, she whishes things were different for them, but they loved him and he loved them for Twenty years, sometimes that is enough time to make a lasting legacy of love and cherished memories.

Leon Walker, Heart Angel....

And now to the wonderful gift, a lovely letter with a cheque saying that they have been following Little Leons story and the adventures he has been having and they would like him to go and have another adventure with Mummy and Daddy and use the money to have fun...... Wooo! what can Little Leon dream of........ Wildlife adventures?  Watching fishys swim in the Deep?  Picnic in the park with Mummy and Daddy?  We will have to wait and see........

When Mummy saw the letter she cried, a wonderful surprise and very very kind.

Little Leon, Mummy and Daddy send many thanks and Beeeg hugs to Big Leons family, he is alive in the memory of the people who's lives he has touched.........

And that includes us!