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Fundraiser for Mason and Erika
Sat, 22 October 2016, 1:00 PM – 4:00 PM EDT
When Mason was born, instead of having our first cuddles, he was held up and whisked away. This was because of decreased oxygen supply in his blood. He was born a blue baby and immediately put on a drug called prostaglandins to keep a fetal shunt in his heart open. This shunt being open would allow him to be kept alive for up to seven days, letting him grow as much as possible so he could be strong enough to endure a life-saving open heart surgery which would conpletely reroute the bloodflow in his heart. This procedure is called the norwood. It makes the right side of the heart (the low pressure side) pump blood to both the body and the lungs. His next few months of life were riddled with feeding difficulties and he had to have a g-tube procedure due to severe reflux (and he lost the ability to suck and swallow). He went into heart failure around 4 months of age and was put on drugs to help his lungs accept more bloodflow so he could endure his second open heart at 6 months of age.
These surgeries do not cure him. Its palliative care. He also needs another surgery and cardiac catheterization next year which we are fundraising for. Recovery time is varied depending if the surgeon nicks a fat duct in his lung.
The possibility of him needing a transplant is also high.
We also have to go to the hospital weekly JUST for bloodwork. This is on top of rsv clinic, dietician, cardiology, feeding clinic, development, and his regular pediatrician. We also have to make trips to Sick Kids regularly because his condition is too high risk for CHEO to do anything besides follow up.
I'm a single mom and due to all of this im unable to work. It adds up really quickly. While I am thankful that I live in a country with an excellent health care system where a lot of things are covered, (and we do get funding for some things) it is an unfortunate truth that not all costs are. He requires spo2 probes which are basically bandaids woth sensors on them. These are very expensive and come out of pocket. Its about 40 dollars for one. They don't last long. He is somewhat immunocompromised and we are unable to take a bus. Ultimately, moving to Toronto is ideal to be close to his primary physicians. My worst fear as a mother is that something will happen while he is in Ottawa and him not being stable enough to be air lifted to Toronto. I have had friends whose babies have passed away because of this...
So we are raising funds to help with the costs of travel, medical supplies, future inevitable hospital stays, and all of the other things that go along with having a heart baby.