My son was born on 20/02/15 with CHD, hypoplastic right heart syndrome. This basically meant that he was born with a half formed heart. At 5 days old my son underwent his first open heart surgery.
After this surgery he had a hard time recovering and had to spend 6 weeks in the intensive care unit. My son kept having problems with fluid on his lungs. The doctors referred to this as Chylothorax. My little boy spent most his time being on a breathing tube as his lungs could not function properly on their own. He had chest drains on his left and right side of his lungs to help drain the fluid. He finally started to get better and was moved back to the normal cardiac ward. On 26/04/15 he was finally released from hospital. That gave me the time to get to know him before he had to go in for his 2nd open heart surgery.
On 16/09/15 my son was admitted back in the Royal children's hospital for his next operation. After surgery my son seemed to be doing fine but then the major issues began. On 01/10/15, Jaxsen had to be taken into theatre for emergency surgery to patch his lower right pulmonary artery as the narrowing in it was making breathing hard for him. A couple of days later his right lung collapsed. This was the moment that I thought I was going to loose my son.
I never left his bedside after this as I was too scared to leave him. He spent a further 2 weeks in the intensive care unit. My son was having a lot of trouble with the Chylothorax again so drains were once again inserted on his left and right side.
On 25/10/15 I had to go home to get a change of clothes for myself and when I got back to the hospital, I walked in my sons room to find a volunteer holding him. She handed him over to me and I noticed that his left chest drain had been pulled out and was laying across his bed. I pushed the emergency alarm and the doctors came rushing in. They were trying to stop the air from getting into his chest from where the chest drain was pulled out. I was not happy that a volunteer would even do something like this and not call for help. After that my son had to go back to theatre to have the drain put back in.
On 27/10/15 my son was taken to theatre to have a broviac catheter inserted through the liver as it was safer for him considering that he was a long term patient who needed medication.
On 28/10/15 my son was taken to theatre again to have his Ligation of the Thoracic Duct tied off. After this surgery we were hoping that the fluid in his lungs would stop. When the surgeon was operating, he accidentally knocked the broviac catheter which slowly leaked poison into his stomach.
On 29/10/15 my son was taken to theatre to have his organs in his stomach washed out. This stage was my breaking point. Because of all the problems that Jax was going through, he started to get a lot of fluid building up in his head mainly. I knew then that my son had a big fight ahead of him.
On 31/10 my son was taken back to the intensive care unit. From his normal oxygen level being 84%, it dropped down to 11% and that's when I prayed to god for help. After a few weeks the fluid had settled down and my son was on the road to recovery. Third week into November and my son was finally able to come home.
Now that my son is back home I am really wanting to take him somewhere special for a holiday as the whole first year of his life, he spent constantly fighting for life. I just want to let him see a different atmosphere instead of hospital and home. Problem is that I can't afford a holiday as I am not employed at the moment so I am asking if people are able to help me at all.