A brave little girl

Today a brave little lady is undergoing transplant assessment. I wont name her as its not my place to but she is at GOSH right now. My heart goes out to her family as she is such a brave little girl who is always smiling. We will be with you all the way. Holding your hand virtually

For me, its been a real emotional time as this little lady has exactly the same condition as my little man, she is almost the same age as him too, which really brings it home what the future holds. We have always known it but its just been words up until now, this somehow brings the reality into sharp focus. I hate that these kids have to get this sick, that they have to fight for life, when there is sick people like peadophilles etc and junkies who just throw their lives away, whilst our babies just want a future. I also hate the way its turned me into someone who can be quite hard and quite bitter sometimes. I hear of old people dying and whilst i feel sorry for their families, i cant help but think that they have had a life, what about our angels who havent? Its not a nice trait but its me i cant help how i feel. I rely a lot on support from fellow heart mums who have become my best friends as i find the more time goes on the less i can tolerate people who whinge about stupid things

Anyway enough of that rubbish, i best go kick myself for my self pity lol

This blog as usual is dedicated to all out angels, especially Zoe, James, Katie, Ellen, Cerys and Ava xx

Its been a while!!

Just remembered this poor neglected blog so thought i would resurrect it. 

Well little man has carried on his usual rollercoaster ride adding his liver to the list of problems he has, but still he faces life with a big smile. One day when im brave enough i will read back over my words to see what life used to be like :-)

This year we will see him reach double figures a milestone that seemed so unreachable when he was born and despite having seriously crap odds he has kept going, showing them all they didnt have a clue. We will be having a celebration of what we have all as a family come through with a big party in December

Before then i am sure we will have one or two appointments and hopefully a few meet ups with my fellow heart mums. Our love at the moment is with Vonny whos dad is poorly in hospital and any other heart hero who is in hospital

This blog as always is dedicated to our angels who will never be forgotten especially James, Zoe, Lewis, Ellen and Katie xxx

Sorry

A huge apology for having neglected this for so long. Will do better

Well lil man is doing well and hasnt had a bad winter. We are on 12 monthly gaps between appointments which is wonderful and we arent due back until august so thats been nice.

We are off to Newcastle in a couple of weeks to stay with good friends and then in may its drayton manor to meet even more so lots of things planned but i will post about those.... I promise :)

This blog as always is dedicated to James, Zoe and Katie and all the heart angels gone too quickly. Fly high xxx

Scared

Well the dreaded appointments are creeping up on us very quickly and its only a few days until we leave. For those of you who i havent bored with whats happening when... We go to london on Monday 11th, on Tuesday 12th we have to be on the ward from 7am having starved little man and given him no fluids from midnight :( he will then have a blood test, and will be given growth hormones, he will then have another injection some time later and hopefully then he can eat and drink. We also have pre anatesthetic tests on cardiology in the afternoon, so ecg, echo, chest x ray and possibly more bloods... On Wednesday we are on cardiology after again fasting little man from midnight so he can have a GA for the MRI and TOE, these are the tests that are worrying me as little man has a leaking tricuspid valve, which for those of you who dont know is on the right side, and as little man only has the right side of the heart this leak is pretty serious as it is compromising the hearts poor function. From what i gathered from his last appointment, once they look at the results we will be left with one of 3 options either they will just keep an eye on the leak and watch and see (that will be the best case scenario) or they will attempt a re repair which we are told is very very risky as the valve is extremely fragile and may not repair, or he will be referred to be listed for transplant.

So a big week for little man next week and for us. We have booked him onto a duck tour and the london eye on Monday just to give him some fun before all the rubbish, we are also staying in the county hall premier inn as a treat, we have asked if we can have a room overlooking the Thames so fingers crossed this happens as little man loves Big Ben for some reason...

I would like to thank everyone of my dear friends who have supported us in the lead up to these appointments i dont know how i would of got through it without you so thank you from the bottom of my heart xxxx

This blog is dedicated as always to James, Zoe, Katie and all the heart angels gone too soon xxxx

For Auld Lang Syne

Happy New Year

Well the time is fast approaching for us to kick this year out and welcome the new year, i know its going to be another rollercoaster year but i would like to wish everyone who reads my daft waffles a very Happy New Year, I hope 2011 brings you lots of love, luck and good health, thank you to all of you who have given me such amazing support this year i really dont know where i would be without you all. Looking forward to lots of get togethers and hopefully more laughs than tears. Take it easy my dear friends

This blog as always is dedicated to James, Katie, Zoe and all our heart angels taken too soon, wishing things were different xxx

Six Years Ago... Continued

Well today seems a good day to continue lil mans story i will explain why .....

Well after a long night in bristol in scbu we expected to be transferred to birmingham childrens but the news came through that there PICU was full and there was no room for lil man, so an urgent call to all the hospitals who deal with HLHS was undertaken, Guys hospital luckily had a bed for him and the transfer was arranged. There were no doctors available from london to come and get him so a specialist doctor his assistant and a cardiac nurse were found who were willing to make the long journey, then came the next problems it was the 11th December and there was only one more saturday after this one for christmas shopping, which meant central london would be heaving, the doctors were very concerned about having a seriously ill lil man who had been moved and already undertaken a four hour journey being held up in london for what could possibly hours, trying to get through the traffic!!!! A long conversation was taken with the metropolitan police who decided rather than just giving the ambulance a police escort it would be safer if they did that, plus stopped the traffic as the ambulance approached to save any danger to the ambulance to people pulling out quickly after the escort had gone .... So my baby was a bit of a V.I.P. that day, infact he has been that everyday but you know what i mean..... We were told under no circumstances were we to follow the ambulance as it wouldnt be safe, so we watched our lil man be transferred to a travelling incubator, and loaded onto an ambulance and watched it roar off with its blues and twos going. I felt like my guts had been wrenched out, we had been warned that this was a very risky time and that he could go into cardiac arrest at any time and being on the road put him in extreme danger... We raced back to the ward so as to follow lil man as quickly as possible, only to be stopped by an ogre of a midwife who insisted i wouldnt be discharged until i had eaten. I have never shovelled food into my mouth so fast, and to this day i couldnt tell you what i had eaten.. She was right to make us eat though i couldnt remember when i had eaten last, it probably saved us trying to catch the ambulance up despite saying we wouldnt!!! Anyway we left St Michaels and did the long journey to london to see what we would face next, just as we entered london the doctor who was in the ambulance phoned to say lil man had been transferred safely and was now in the hands of the cardiac staff in Guys, the relief was amazing....

We arrived at Guys just before 9pm and went straight to the PICU, where we were greeted by the fantastic staff there, lil man was in an open cot, admittedly hooked up to lots of monitors but even so it was amazing, then the nurse asked me the most fantastic question 'did i want to hold my baby' it was lovely to actually get a cuddle even though the leads made it very scarey... We were shown to the parents accomodation in guys and if anyone has ever stayed there they will know that the Hilton it isnt lol but we fell into bed exhausted, the next day was full of tests and echos, towards the end of the day they said he was first on the list for his first stage in the morning... ekk the 13th luckily it wasnt a friday!!! it was a long night and we were back by lil mans side by 7am waiting for him to go down... There was a change of plan and it was decided he wouldnt go down until late morning, so at 10am i decided i wanted my boy christened the nurse Lisa was a true diamond and arranged it all for us, even dragging the vicar from the carol concert :) it was a quick service but it felt good that it had been done, then the dreaded time came and they came for my baby, we had been told he only had a 20% chance of surviving this op so the odds werent with him. Leaving him in the anathestic room was awful and i dont want to dwell on it too much... We spent a few hours transferring from the parents accomodation to the Ronald Macdonald house which was like the HILTON once we had got there we spent the rest of the time in the smoking room with other parents who were fantastic, finally after 6 hours the call came that we had waited for lil man was back and was safe, we rushed over to see him and although i was a bit taken aback at first we soon got used to what we saw....

Lil man went from strength to strength spending four days on PICU before being moved to Savannah ward, he stayed there until the 21st December when he was transferred to Bristol Childrens, this was a big milestone as it was a step closer home... Christmas was hard that year as i had to leave my lil man on christmas eve to return home to be with the other children to leave him was a real wrench but i knew the others needed to see me... On the 30th December lil man was transferred to our local hospital, and after a huge row with the doctors they agreed if we learnt cpr and how to give his meds and feed down his ng tube he could come home on New Years Eve...

So 6 years ago today my lil man came home to be with his brothers and sisters, and we saw in 2005 together as a family.

This blog as ever is dedicated to James, Katie, Zoe and all the other heart angels taken too soon xxx