We have learnt that Connors stay in ICU will be for many months, likely leading into his Open heart surgery and perhaps another to correct his trachea (airway) and reposition his double aortic arch. His surgery on Tuesday was never expected to make huge improvement; however it was necessary to alleviate the intense effort required by him to breath. Connor still has very noisy breathing (stridor) constantly and his work of breathing is exhausting.
We are remaining positive and celebrating his little milestones and minor improvements. His breathing on his own, awake and we can have the odd cuddle.
However the realisation has kicked in regarding the impact havibg a sick bub in hospital for months on end has. He required 24/7 One on one care with specialist paediatric nurses. We will be surviving on a single income, and will continue to adjust to hospital life and work closely with many therapist and specialist in order to give Connor the assistance he needs now and in future.
The support and encouragement we have recieved for the staff at Lady Cilento and friends and family, not to mention friends of friends and strangers is an absolute godsend.
Thank you sincerely from Connor and his adoring family
Original posts before current admission:
Connor was born on the 18th December '17 with major heart defects which affect both his blood circulation and breathing. He literally fights to breathe 24/7, in visable distress with constant stridor and retraction. It is brutally distressing being a parent watching helplessly at your 2 week old child in such distress, knowing it will continue to get worse by the day, hoping surgery will alleviate some of his work of breathing. The nature of his conditions means that he will be impacted for life. Of most concern is that he will continue to deteriorate untill his first open heart surgery, best case within 4-6 months.
His conditions are 2 major congenital heart defects. Double Aortic Arch; the major artery supplying vital organs and whole body, is divided in 2, which wrap around his trachea (wind pipe) and esophagus (food pipe). This severely restricts his breathing and limits food intake.
In addition Connor was born with another CHD called Tetralogy of the Fallot (TOF). This involves a further 4 related defects that basically results in low-oxygen (blue) blood circulating his major organs and body; too little oxygen reaches the body. This puts him at risk of having cyanosis at any point, especially when feeding or crying in which he will turn blue and have either seizures or loose consciousness.
Open heart surgery will occur at 4-6 months; up until such time we need to manage at home, unless his symptoms become too severe prior. Further corrective surgery will be required during his lifetime.
I am his father. The time has come I must swallow my pride and ask for assistance to raise funds for Connor. The money raised is intended primarily to prepare for surgery/s. We are researching the benefits of private health cover to assist; this obviously has ongoing costs. We will be required to see Cardiologist and Respiratory specialists ongoing. In addition, Connor is going to require 1 on 1 care until at least his first surgery, and following. Maternity leave will lapse during this time and we do not have the means to live off my income alone.
As his father I am already working 6-7 days a week working 4 jobs in order to support my family. I am desperate to raise funds to allow the necessary time off to support Connor, my other son and his mother Bianca during recovery. Despite my efforts to date we are experiencing temporary financial hardship which restricts our ability to provide Connor the best possible care.
I know that there are many bubs and families worse off then myself, Connor and Bianca. However I believe we have already exhausted all other options avaliable, and would like to ask for assistance from anyone that is willing and able to assist.
Kindest regards and thank you in advance.
Connor, Jason, Bianca and Kayleb
- smart trike
- Sylvanus Richards
- Caitlin Brierley
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