21st December '09
Daddy arrived in shortly after 8am from a long nights work, i was up at around 6.30 with you. We were playing with you loads, Dr Scree (Dr Quinns reg) came in with his colleague and said you were 2nd down on the list and should be due to theatre at approximately 10-10.30. you were put on fluids at about 6am with yer last feed been at about 3am this morning! Felt so bad for you, you love yer food and here we were fasting you and you starving poor lil man, not fair eh??? Despite the huger you were full of beans, your dad and i were playing peek a boo, and tickling games and getting you toys to keep you amused, you were havin great fun.
Your nurse came to inform us plans had changed for theatre and you wouldn't be goin down til 12pm... I was furious, your only 5 1/2 mths, fasting since 3am and it was so unfair, what could be the delay, today was just emergency cases. No docs came to let us know of the delay either which was annoying. I went off to the bank and gave u and yer dad some dad to son time :-) i was only a 1/2 hr gone when i came back your dad had a snooze while i gowned you up for theatre. When yer dad woke we played with you loads, you were so clever figuring out where i'd pop out from while we were playing peek a boo :-) We got loads of giggles outta you despite 9hrs fasting.
At 1pm they called you down to theatre and about time too, poor lil man you've enough to be dealing with without unxplained dealys. Before theatre they did all their usual checks. One doc queryed why a specific cross bloods wasn't done, another agreed they'd do it once they got you on the table. i gowned up and brought you down with the nurse, this was my 5th time to bring you in for ansthesia, twice in cath lab, twice for stent procedures and now today. Dr Scree's colleague tried and failed to contact Dr Quinn to check if ansthesia could be administered.
The anethetist rang Dr Quinn on her mobile and when she came off the phone she said "Dr Quinn said to go ahead with the induction, he'll be here soon". The put you asleep, i gave you a kiss and handed you over to doc's. Fergal had still not arrived when i was leaving!
Your dad & i went to the canteen to get lunch, it should only take an hr or so, so we didn't bother leaving the hospital. On the way to the canteen we met laods of celebrities, there were all doin the ward walks for the lead up to xmas. Present was PJ Gallagher, Mickey Joe Heart, Mikey Graham, Glenda Gilsonen, Rosanna Davison, Keith Barry and many more. We got chatting PJ Gallagher and your dad took a pic of me & him, aghhhh! Think yer dad was hoping i'd say hop in there with Glenda but i was like no chance a sniff of her and it's good luck me... lol! We went to have lunch, met Kathleen our CNS and had a chat with her bout you. My uncle is good friends with John Hogan, country musician who had been chatting Daniel O'D earlier today, so he asked John could he give me a call to wish you well... and so came the call from the wee donegal man ;-) bet yer nanny kate & marie would be raging...
Just before 2pm came a frightening call from theatre, i couldn't really make them out, front canteen door was locked so i'd to go out the side door levaing your dad alone not knowing who was on the phone to me. The only word i can remember really is "can you come immediately". I ran as fast as i could to the stairs and belted up 2 flights to theatre, where i think a doctor let me in with his badge, can't even remember wot was goin through my mind, there was that many thought and sceanrios getting from canteen to theatre was a blurr. Waited patiently outside theatre where i began to cry my eyes out wondering what was wrong. Fergal (kidney surgeon) came out, eyes full of worry and sadness, i kept thinking this cannot be happening over and over. Fergal sat with another nurse beside me "are you on your own" i just asked him wot was wrong where he explained how you had met major complications and you were deteriorating. With that Colin McMahon (cardiologist) rushed by me trailing my call out to him.
My heart sank, you dad phoned where i told him to come quick. He arrived and we both sobbed out heart out as we awaited news on you... Fergal told us your heart stopped and somehow this didn't phase me because i had heard of loads of babies pulling through cardic arrest. 2 Cariologist were with you and Lars (heart surgeon) was down the hall. I asked how were you on a scale of 1-10, 10 being the worst and he said 8-9. I could not believe that over an hour ago i held you in my arms and kissed you goodbye as they put you sleep now you were in theatre fighting for your life. 2 nurses came with clothes, almost in tears as they passed us.
Docs brought us through to theatre, into what looked like ICU and into a conference room. Confused as to why we were being brought in here.Colin, Kathleen, Fergal & another woman sat around the table in the confererce room. your dad and i sat opposite them. Colin began explaining what happened, most of which just went over our heads, into the conversation realisation sat in that our worst nightmare was about to happen. When Colin spoke those dreaded words, every parent wishes they'd never hear. "I'm sorry but Billy passed away", your dad and i were inconsolable, i kept saying over and over again, "please tell me this is not happening, please tell me this is a dream"
In theatre i had been thinking we'll be in for xmas day but it's not so bad, we can skype your dad & abigail and we can see the experience through wireless internet. Sure xmas day is bouring anyway and sure now it'll give ppl an excuse to have something to do and come visit you. I'd created our whole day. This could not be happening, it really could not. You were thriving, gaining weight, meeting all your milestones, keeping reasonably well healthwise, smiling, giggling and playing with us just hrs ago. How is it that we're never gonna see you smile again, see that surious look on yer face when we play peek a boo or try figure out who's Ro Ro and who's Maggie, never see you demolish spuds or your favourite melon desert, never see those beautiful beaming lovable eyes, never hear that infectious giggle, never feel the warmth of your cuddles. Total devestation, what are we gonna do without you. Nightmare was now reality.
That curious look, just hrs before your scheduled op:
After a short while without a word to us, Fergal excused himself from the conference room. Colin and Kathleen were in shock, Colin couldn't understand, your death was so unexpected, a complete shock, your body should have tolerated this. You didn't even get operated on, not likely an anesthesia reaction b'coz they happen within 10-12 of induction and this was 30mins later. We were informed the coroner would have to be informed and a post mortum take place due to unxplained death.
We were left alone, i txt teresa and asked her to come immediately, she only worked down the road didn't telll her why. On of the nurse's rang your nanny kelly to explain you had met complications. I made a decision to ring both your nanny's, paul & shirley. It was the most horiffic thing i've had to do and to do over the phone was cruel but i didn't want word spreading before family knew. I could feel their pain in the phone calls, complete shock and devestation.
Kathleen took us back to St Teresa's ward where you were laid, to say we were in sock was an understatement, a tube was down your throat and plaster around your mouth, you just looked induced, asleep waiting to be woken, still warm and cuddly. This was the most cruelest act that God has put upon us, this was not your time, you gave so much to us and yet still had so much still to give, totally unfair. Teresa arrived where i delivered the devestating news, paul, trish, nanny kate & tina & luke, all came to see you. Luke couldn't bear to stay so he left.
The pathologist arrived to give details of the post mortum, it is likely that we could take you home 2moro. It is portocol that we identify your body to two guards for the coroners report. This was very upsetting, it was as if we had done something wrong to you. After a short while we took you down to the mortury and and said our goodbyes til morning. Paul drove our car home and Trsih drove your nanny's home, Teresa went home on her own. As i sat in the back of our car, i cried my eyes out the whole way home, repeatidly telling myself this was not happening.
When we got home Maggie, Johnny, Daddy & Glen were waiting for us. Liam, Sheila & Kathleen came then. Just before we headed to bed Rosaleen & Luke came. Your dad didn't sleep much as he was very upset, i was equally upset but i think exhaustion took over my body and gave me a rest. My last thought goin to bed was "please let all this be a very bad dream", no such luck!
Billy below just hrs pre-op...
Sunday, May 9, 2010
Saturday, March 20, 2010
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
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
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!
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.
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!
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 ;-)
<<<< 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 ;-)
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