Elizabeths Fontan Procedure – Open Heart Surgery Successful !!
October 29th, 200929th October 2009
I would like to share some great news in that Elizabeths Open Heart
Surgery was a huge success. The operation lasted over 4 hours and one
good thing was the Pressure in the heart remained on 10 and didnt increase
much after op. The doctors feared that the heart may have been in
distress therefore they would have had to Stop it and use the by pass
machine to keep elizabeth alive however her heart was tick tick ticking
away all through surgery.
She was wheeled into CICU unit and hooked up to all machinery before we
could see her. Dr Grant gave us the thumbs up and was very pleased with
Elizabeths operation. Dr John Awad also came in to see us and he had no
problems with how things went. He told us that they are planning to take
out the life support machine later on today. Well our fiesty little
Elizabeth only 1 and a half hours out of surgery was well aware we were
next to her because she responded to our voices.
Leslie asked her if she would like him to sing her a song and she shook
her head to say NO. He then asked Elizabeth to squeezed his hand and
she did with such strength. I cant believe how gutsy our cheeky monkey
is. Later on Nona Mary asked Elizabeth if she wanted to sit on her bed so that the can watch Mickey Mouse Club House and she nodded to say yes. Its amazing just how alert Elizabeth is only hours out of surgery.
One huge thing leslie and I noticed was that she was PINK wow her fingers,
and toes are PINK no traces of bluey purple. We took photos of her thumb
last night so that we can compare. Just seeing her in person and you can
tell she looks different already.
Not even 4 hours out of surgery and the CICU team removed the LIFE SUPPORT
MACHINE already Elizabeth is now breathing on her own with a little oxygen in the nose.
Oxygen Saturation levels in a normal person is about 99% OR 100%
Prior to surgery Elizabeths Oxygen Sats were ranging between 70-80%
Now she is sitting on 95% and going strong!!
2nd November 2009
Elizabeth is out of CICU and is on Ward C2 South Level 2 Bed 2
in her own room.
She has developed Particallly Right and Left Collaped lungs more so on the right.Yesterday she gained 2 kilos and most of that was fluids. She has been given Medication that releases fluids and she has 2 drains that will remain in until the fluid/secretions stop draining.
The doctors are saying at this stage Physiotherapy (bubble blowing) deep breathing excercises will help her. Im not quite sure how long we will be in hospital but we have been told we will be in hospital for her birthday which is Monday 9th November and longer, unless she has a miraculeous recovery.
Overall her heart operation has proven to be a success. Her lips are red, her fingers and toes pink, her eyes are even brighter blue and is looking healthier. Its just the other little hiccups we are experiencing along the way.
Elizabeth is still in hospital and I will keep you all posted on her recovery
9th November 2009
HAPPY 4TH BIRTHDAY ELIZABETH
Elizabeth woke up to a fantastic day ahead.
Laura and Fiona Music Play Therapists came in especially for Elizabeth to sing her HAPPY BIRTHDAY TO YOU and many other songs.
Then Elizabeth spotted the Minnie Mouse balloon that Leslie and I bought her.
Later on in the afternoon we all gathered into the play room to have a small party for Elizabeth.
Guests include Yiayia, Papou, Nona, Aunty Carla, Georgia, Zachary, Jessica, Angela, Marco, Gabriella, Aunty Georgina, Konstandina,Billy, Patricia, Tony Alexia, George and Nicholas (Baby), Thea Effie, Dimi and Baby Vasili.
We all sang Happy Birthday to Elizabeth and she blew out the candles. We cut the cake, opened our pressies. Dr Gary also made a surprise visit as he just happened to be on the ward for another patient.Elizabeth gave him his special present that we made as a thank you.
We later took the party to Elizabeths room as she Trick or Treated all of her Guests as they left. In the afternoon Theo Nectar came from Wollongong to visit Elizabeth and he got her a winnie the pooh bear which Elizabeth loves so much. Uncle Con and Gina from Wollongong sent Elizabeth 3 balloons and a stitch me up bear which we will do later when we go home.
Thank you all very much for your efforts in making Elizabeths Birthday a special one given the circumstances. Hopefully when we come out of the hospital we can have a bigger party and get all the family together to celebrate as we do. Lots of Love Leslie Effie and Elizabeth xoxoxo
17th November 2009
Elizabeths heart operation is a huge success, She is oxygen sats are on
average 90 – 98% which is amazing. Overall Elizabeth is in good spirits.
The Photo of Elizabeth at the top of this page with her hands in the air was taken as Elizabeth said “Yippee Doctors fixed my heart”
The problem at this stage is the latest xray is showing the Left Lung is clear however
the Right Lung has increased in Fluid Volume and is on its way to
collapsing. The drain that is still in Elizabeth at the moment isnt releasing much
fluid which means the tube may have moved out of position.
The plan was to remove the current drain and give Elizabeth a
couple of days to recover before putting her under Anaesthetic again and
re inserting another Drain into the sight of the Right Lung to enable the
Fluid that is trapped to be Released.
Dr Kashif managed to save the drain as there seemed to be some fatty tissue that was blocking the valve . With a little patience and lots of tapping Dr Kashif lodged it out of the way and the drain was saved. Therefore at this stage we do not need to insert another drain in. Woo hoo
24th November 2009
After a long awaited 4 weeks, Elizabeth is out of Hospital and back at home today Yippee !!!
The ECHO showed the Heart is Functioning very well and the Chest Xrays show the Fluid in the lungs have drained therefore Elizabeth has recovered well.
Elizabeth had the pleasure of meeting the Sydney Roosters – Rugby League Team
see these images in the photos section of the website. Elizabeth also Treated them with a chocolate from her Pumpkin and Witches hat and showed them her witches Cackle. They all had a giggle and waved goodbye.
Elizabeth’s Famous Sayings while in Hospital:-
1. “EXCUSS ME LADY, WATER PLEASE”
2. “NO THANKS”
3. “MAYBE I CAN TAKE MY MEDICATION LATER”
4. “MUMMY LIFT ME UP”
5. “TRICK OR TREAT”
6. “I DONT LIKE IT”
7. “DOCTOR STOP HURTING ME (when getting bloods done)
8. “LOOK MUMMY THE GIRAFFE IS DANCING” (while watching Madagascar 2 in CICU)
9 “I CANT DO IT, I DONT WANT TOO !!! (when doing bloods)
10 “MUMMY PLEASE TELL THE DOCTOR TO STOP HURTING ME” (when trying to get a canular in)
11. “IM TOO BUSY TO TAKE MEDICATION”
12 ” NO, NO , NO, when taking medication NILSTATE for her tongue.
You have to laugh at some of her quotes. Overall no matter how much Elizabeth got upset with getting bloods or taking medication she wasnt used too , she would still enjoy trick or treating the Medical Staff on board. She really likes everyone who took care of her and wants to say THANK YOU xoxoox
I would like to take this opportunity to thank the following People.
To the lovely Families we met in CICU and on the wards !!
* Chloe, Darren, Remy and Jake
xxx Stay Strong, our thoughts and prayers are with Jake, he was loved by all of us.
Hope to catch up with you all soon Thinking of you always Effie, Leslie and Elizabeth xxx
Ps. Thanks for her Bday Pressie it goes well in her kitchen and she is cooking up a storm !!!
* Adam, Nicole, Tiana and Older Sister xxx we were glad to see Tiana up on the wards the
day we were leaving. Hope to catch up with you all soon
Regards Effie Leslie and Elizabeth xoxox
* Monta, Oliver and Leonardo, Glad to see Leaonardo was leaving the same day as us.
Its been a long 4 weeks but we all managed to get throught it.
Looking forward to catching up soon.
* Betty and Maddison hope all is well with you and the family, Glad to see Maddison in better
spirits the day we left. Good luck with it all !!
* Patricia, Tony and Family, Thank you for the chats and making Elizabeth laugh and giggle
with your little munckin. Thank you for sharing her special birthday with us all.
Catch up soon Luv Effie xoxox
* Luke and Family, It was nice meeting you for the last 4 days of Elizabeths stay in Hospital.
She loved playing and talking with Luke and your children.
Hope Luke is fine and all beter now. xxx
* Bernie and Family, Well we were glad to hear that you were off home after such a long time
for you over the last year in and out of hospital. We do hope that all will get better soon.
Stay strong and hope to catch up with you and Luke oneday.
The photo of you and Elizabeth is in her Photos section of this website xxx
To the wonderful Medical Team as follows:-
Dr Grant words cannot express our feelings and our gratitude for you giving our daughter life for the 4th time after surgery. You are a miracle worker and we are blessed to have you as Elizabeths Surgeon. Again our warmest wishes from the bottom of our hearts xxx
Dr Kashif Im hoping this is your name because I didnt write it down. I know Elizabeth enjoyed trick or treating you almost every day. I hope that your Chocolate stash hasnt overloaded your desk draw Everytime you have a freddo just remember Elizabeth. Thank you so much for your kindness and caring for our little girl. We are glad to know that you are a part of Dr Grants Team. Cheers Effie xoxox
Dr John Awad – When we found out you were going to be Elizabeths Anesthesiologist we were over the moon to know that you would be by her side again. I have said it before and I will say it again. Thank you Dr Awad, you too have such a calming and spiritual side which is why Elizabeth is so connected to you. Elizabeth felt safe knowing you were there and we truely are in debted to you. I know you have been called “John the Baptist” before and that you are. Thank you so much Dr John with Love xxx
Dr Gary – this was the first time we met you and Elizabeth warmed to you so quickly. Thank you for making out girl laugh and smile the night before Surgery. The photo of you both looks so cute. with Love xxx
Dr Steve Cooper – Thank you for Caring for our little girl while Dr Murphy was out of town. Thank you also for doing such a great job with the Cardiac Catherter’s over the last 4 years.
Also to the Cardiology Registrar Tim, Martina and team thank you !!
We are so lucky to have so many people on board who truely care about Children Like Elizabeth. Kindest Regards xxx
To the Cardiology Team, Dr Christoph Camphosen, Dr Stephanie, Dr Owen Jones and team, Our Deepest thanks for your Knowledge and support over the last 4 weeks and Yippee we made it home before Christmas woo hoo. I was getting worried at one stage:) You all made Elizabeths day everytime you came to assess her. Thanks from the bottom of our hearts Regards Effie, Leslie and Elizabeth.
Dr Murphy – Thank you for taking care of our Beautiful little girl for the last 4 years and it was great catching up with you on her last day before she was discharged. As I mentioned Elizabeth is showing signs of Fontan working as we havent seen her so pink !!! Again Thank you for all your help and guidance and support throughtout Elizabeths Journey. With Love Elizabeth, Leslie and Effie xoxo
To all the Nurses who cared for Elizabeth in the CICU unit. Our hearts go out to you all.
We are so grateful for the care she received after surgery with all of you looking out for her round the clock. I believe Elizabeth had a great time Trick or Treating you and thank you for participating on this special Halloween Occassion that I promised her. Good thing about the way we did it was that you got the TREAT he he he. Too many nurses to name but here goes. Rachael, Lauren, Emma, Nadine, Zoe, Claire !! Also there were so many nurses who cared for Elizabeth from birth, Nurse Lauren who actually admitted Elizabeth at only just 4 hours old. Nurse Charlette, and many more I cant remember names but faces I remember well.
Thank you to KAREN SHERLOCK – Heartkids NSW Rep for SCH – Randwick. Thank you for all your visits and wonderful support you gave us yet again Karen. You are a wonderful person and Heartkids are very lucky to have such a supportive person like you. It was nice to see the photos of Daniel growing up to be a big boy. He looks so healthy now and we are happy all is going well for you and your family. THANK YOU HEARTKIDS AUSTRALIA for your support over the last 4 years xoxox
Big big thank you to JESSIE – Social Worker, It was nice to catch up with you again and we want to thank you so much for all your help over the years even more so the last 4 weeks.
You too are a fantastic person and we are honoured to have you again by our sides.
Hopefully we wont need to come back to SCH – Randwick as an inpatient however we will be doing regular visits to see everyone over the years. xoxox
Thank you to the Volunteers who came in with their pet dogs BUDDY( black laborador), WINDSOR (St Bernard), CHLOE (Poodle) who performed many tricks including using a skateboard, HAZEL (Border Collie) who jumped up onto Elizabeths bed and wanted cuddles.
You all made Elizabeths day !! Thank you from the bottom of our hearts. xxoxoxox
A huge thank you to KERRY Playtherapist from C2South. We would like to extend our gratitude in your wonderful efforts in making Elizabeths 4th Birthday a day for many fond and special memories.Thank you also for making Elizabeths 4 weeks in hospital a fun stay.
A very BIG BIG THANK YOU to Leanne Sanidas who owns and runs :-
The Cake Studio
Shop 2, 341 Rocky Point Road,
Sans Souci
Ph: 9583-2328
Thank you Leanne for your kind donation in making Elizabeths birthday cake. Our family really looks up to families like yours. Thank you for making her day such a special one and in future we will be coming to you for any future cakes we need!!! Its the least we can do
Big thank you to all the Nurses at C2 South Naomi, Tanya, Peter, Tracey, Amy, Laura, Daniel, Tammy, Naomi, Amy, Laura, Veronica, Angela, Joel and more !!!
I know that Elizabeth gave some of you a hard time more so when you had to change her dressings and get a canular in but Elizabeth Showed you that she truely loved the care she Recieved from you all. I hear she even sang some of you the song ‘ I LIKE TO MOVE IT, MOVE IT, from the Movie Madagascar. Our Family truely is grateful for all your support and guidance, and patience while we were in hospital. It was our pleasure in helping out with changing, weighing nappies and jotting down note and making beds. You guys are all such very busy people.It was the least we could do to say thank you for caring for our cheek monkey.
Last but not least – OUR WONDERFUL FAMILY AND FRIENDS !!!!
Pop and Grandma Feather for making a special flight over and being their for Elizabeth the day after surgery. Leslie and I would like to say thank you for being their for us and loving our munchkin.
Mum, Dad, Mary and Albert – We want to thank you all so very much for the love and care that you have shown Elizabeth Leslie and myself. Thank you for giving us the strength to keep going even though at times we just wanted to break down and cry. We love you all so very much . xxx
Thank you to Elizabeths God-sister Georgia for managing to track down and find Mickey Mouse – It really made her day. Elizabeth loves you so very much and is looking forward to the years ahead of you and her spending special moments together. xxx
Words cannot express the amount of calls messages emails and facebook commments we got. Everyones thoughts were with you Elizabeth. You are a very very lucky girl because you have so many people that love you. Thank you all so very much for the support !!!!
You will always be remembered by us always !!!
With our Sincere Love
Effie, Leslie and Elizabeth Heldzingen
xoxoxoxoxoxx