EVERY PARENTS WORST NIGHTMARE

21st December '09
It might take me a while to get the courage & strength to write about this horriffic day but i promise when i'm ready i will share it with all of you, this picure was pre op on that very day, how brave, how cute was our precious little man xox Love Ya Billy Always & Forever xox

Operation Confirmed :-)

20th December '09
Your dad came in from work and i hopped you straight down to him and back to bed i went and myself n t managed to get a couple hrs kip after a long night of you acting the mick! Just before 12 Dr Scree called to say Dr Quinn  has managed to put Billy on the emergency list for surgery 2moro, he said we did not have to take it but maybe it might be a good option in case you took sick over the xmas so i accepeted. And so the mad panic began to get you ready and Abigail organised!

We got to Crumlin bout 5pm, on the way up we chatted bout the possibility of you being in for xmas day and we accepted the possibility and option like using skype and taking it it turns to be with Abigail! Hard decisions but the main thing was you were gonna be fixed, well partially fixed anyway! No beds available in St Teresa's so we were admitted to St Peters, we got settled in the nurses were very nice. Your dad had to leave for work so he went to get me some dinner.

One of the nurses gave me a green bumbo seat for you, maggie had got you a red one for xmas it was great to try it out for you, my got you were soooo cute sitting up smiling at me the ward sister said all you needed was a pipe. I spiked up yer hair and took loads of pics, you were delighted with yourself sitting up looking all around you! Docs came and filled me in on things to expect 2moro and what complications can occur and solutions to problems should they arise. The IV nurse came to put in your canula, poor babes felt so bad for you wish i could take the pain for you, took her 2 attempts to get it in.

Never usually take my camera to the hospital but seen as it was xmas and i brought yer santa outfit with me i said i'd take loads of pics of you and it was gonna be your 1st surgery even tho you've had 4 diff procedures under anestetic b4 this time you were being opened!!! The lights were off and you were sitting up in your bumbo and you kept beaming up into the air, Eyeore was painted high up on the wall but it was hard to know wot u were beaming at coz taught it was too dark for you 2 see Eyeore properly plus u never really beamed like this when watching telly at home. So i recorded you on video and boy were you beaming into the air lil man... at what i don't know looking back now i think i know exactly wot it was... those dimples were just heart melting chics xox This video can be watched by selecting the link below!!!

http://www.youtube.com/watch?v=Sx9MyR5u9w0

Operation Off/Operation On!!! aghhhhh

18th December '09
Fed you at 3.30am this morning in the hope that when i rang crumlin at 8am your operation would be back on as scheduled. Telephoned at 8am to be told it had been cancelled due to bed availability and cutbacks, surgery would be scheduled in the new year. I was so angry and frustrated, this repair was emergency in my eyes, i was terrified that you'd take more cynotic episodes over the christmas, they are just too dangerous and scary to happen again. Rang Dr Scree and expressed my utter disappointment with Dr Quinn and his management of care towards you, also telephone Kathleen (CNS) to tell her your surgery had been cancelled and how upset and worried we were!

19th December '09
Your dad was on nights so your godmother Teresa stayed the night, Teresa usually stays in the back room but 2nite i asked her did she wanna kip in with me n you. You were in your cot but do ya think you'd settle, i don't know how many times you woke until eventually i put you in between the 2 of us, you settled for a while then you were wide awake again and you were like that the whole night, kept both me & t awake, we were exhausted!

Abigail's Nativity Play & Hos Prep!

17th December '09
This morning we got prepared for your hospital stay for your kidney repair surgery 2moro. Abigail had her playschool nativity play this morning and she was a pudding, i had got you a pudding outfit so you'd be matching your sister ;-) I dressed you up and we took you to the play, your sister was just brilliant, she made us all proud and remembered all her lines and sang all the songs brilliantly. Everyone just doted on you coz u just looked adorably handsome and soooooo cute in yer pudding outfit.

Anywho got home and did some more packing for the hospital and got things in order for Abigail. You had loads of visitors up to see ya off, yer grandad Ollie came and your granny & grandad kelly also came, stan & sheila came and shirley. Rang crumlin to check status on bed availability and there was a big feic up and you were cancelled. I was so disappointed and frustrated. It took me over 1 1/2 hrs to get someone on the phone to figure out where we stood and what was the POA for kidney surgery and what i was to do with your over the christmas period. After endless calls i got no satisfaction. I was told to ring am and feed you during the night as you may get called 2moro.

OPD App with Dr Quinn

16th December '09

We couldn't arrange a private appointment with Dr Quinn regarding you recurring kidney problems so we managed to get a public appointment quicker (bizare). Anywho we took you up for a renal scan first and then we came back down with the results to Dr Quinn. Dr Quinn said we'd no option really but to go ahead with kidney repair surgery and he'd like to schedule you in for the 18th Dec '09. I had a feeling things were gonna be scheduled b4 xmas but i was happy for this to happen b'coz it meant you'd be all fixed up and ready for heart surgery in March, plus we'd be avoiding hospital stays for kidney infections.

Everyone at home was suprised and kinda worried but your dad and i were relieved that at least for xmas you'd be free from the dreaded kidney spasams. If everything went as planned with be taking you home on the 22nd Dec just in time for santa!

Your 1st Tooth :-) & Visit to Dr Lars Nolke!

15th December '09
<<<< Just look at the puppy fat ;-)
Yesterday Johnny was playing with you on the sofa and he reckons you have a tooth... you were goin mad with yer gums and he had a little feel and said he thought he felt something. So this morning i sat with you and had a good feel around yer gums, consulted with Maggie and it is confirmed you hav got yer 1st Tooth, hurrah :-) I felt your bottom gum and i could feel the tiniest sharp edge, so i reckon it's just barely cut through.

Also had our 1st appointment with your cardiac surgeon Dr Lars Nolke in the blackrock clinic, Lars was so happy with your progress and weight gain. He was positive that you were working well towards your surgery in March and your healthy weight gain would be favourable. We queryed your kidney repair surgery and he was confident that you would be strong enough.

We talked about your future as a heart baby/child and your ability to be a 'normal ' child and lead as normal as possible life. We had been under the impression that you would not play many sports and your activites as a child would be limited but Lars said that once you are over the first few repair heart surgeries you would go on to do much activites as any other child. Your dad was so pleased to hear this, he so wants to see you out playing football with your cousin's Finn & Kyle and all the 'boys' in the years ahead, we were so pleased with Dr Nolkes' confidence in your future prognosis!

He said that the surgery in March would be very complex and it would be the first in a line of heart surgeries for you. The first being to join the MAPCA's (extra arteries) up to the main pulmonary arteries and wait for them to grow, also in the first surgery they would hope to put in an artifical pulmonary valve (coz urs is missing lil man). The second surgery once you have time to recover would be to close the ASD & VSD (holes) or maybe partial closure depending on how well you do. Then as you grow the artifical valve would have to be replaced as necessary maybe @ 4-5yrs old, in your early teens and late teans/early adulthood you could have a valve inserted that would grow with & hopefully last a lifetime!

A great day all round ;-)