Heart Warrior Drake
Donation protected
Sweet baby Drake was diagnosed with severe aortic stenosis, which is a narrowing of the Aortic artery and valve at around 20 week's gestation. His blood was not flowing through the Aortic artery or valve at all.Due to the lack of blood flow the left side of his heart ended up getting smaller and smaller, weaker and weaker. His diagnosis then changed to Hyperplastic left heart syndrome (HLHS). He was scheduled to born via C-section to ensure that the Cath lab team and the Pediatric OR team would both be in the room ready to operate on his heart the very first moments of his life. This all had to be done at a larger hospital due to his severe and rare case. Travel 3 hours away is what ended happening.
Drake decided to come a week earlier than the planned C-section. Luckily my sister and her husband were able to arrive at UCLA in time for the Dr. to get all the teams ready. Drake was born at 8:59 am on January 16th. He was taken right away by the Cath lab team for his first procedure. Drake was in too much distress, the blood could not flow properly so it was filling his lungs. So the OR team was needed.
They had to open his chest to perform a hybrid Norwood procedure. Drake had two stents and two bands place on his heart. The stent put too much pressure on his heart which caused his heart to have arrhythmia, now Drake had to have an outside pacemaker. At 3 days old Drake went in for surgery again to get the full Norwood procedure done to try and stop the arrhythmia. They took out all the artificial hardware put in from the first procedure, thinking once the hardware was out maybe the heart rhythm would come back. Unfortunately that has not happened yet.
Drake is now a week and 2 days old (1/25/18) and has not got his rhythm back, other than that his numbers, oxygen, all of that is going well. He is still on the ventilator, but is being weaned off slowly. He just started feedings in his feeding tube. Next week the Dr. will decide if he needs a permanent pacemaker put in, if so Drake will being going in for a 3rd operation.
Mom and Dad have been by his side the whole time. Unfortunately this causes a huge financial strain. They have a home 3 hours away with 3 other children. They are have to make sure all the bills are paid at home and their children are fed and cared for. Then on top of that, there is the expenses of staying at UCLA. Parking alone is $12 a day. They are at the Ronald McDonald house and that is $10 a day. But the RMDH is an hour away so that is a 2 hour round trip, at least every day.
I am putting this fund together to help them with their stay so they can be with their son. Food, gas, lodging, medical expenses will add up fast. We do not know how long Drake will be in the hospital. This is a life limiting condition that will require lengthy hospital stays and ongoing medications and medical interventions. We are praying every day for baby Drake and so far he has proven to be a fighter. He is the bravest baby I have ever met.
Every little bit helps. Thank you for showing all your love and support for this brave little man and his parents.
Drake decided to come a week earlier than the planned C-section. Luckily my sister and her husband were able to arrive at UCLA in time for the Dr. to get all the teams ready. Drake was born at 8:59 am on January 16th. He was taken right away by the Cath lab team for his first procedure. Drake was in too much distress, the blood could not flow properly so it was filling his lungs. So the OR team was needed.
They had to open his chest to perform a hybrid Norwood procedure. Drake had two stents and two bands place on his heart. The stent put too much pressure on his heart which caused his heart to have arrhythmia, now Drake had to have an outside pacemaker. At 3 days old Drake went in for surgery again to get the full Norwood procedure done to try and stop the arrhythmia. They took out all the artificial hardware put in from the first procedure, thinking once the hardware was out maybe the heart rhythm would come back. Unfortunately that has not happened yet.
Drake is now a week and 2 days old (1/25/18) and has not got his rhythm back, other than that his numbers, oxygen, all of that is going well. He is still on the ventilator, but is being weaned off slowly. He just started feedings in his feeding tube. Next week the Dr. will decide if he needs a permanent pacemaker put in, if so Drake will being going in for a 3rd operation.
Mom and Dad have been by his side the whole time. Unfortunately this causes a huge financial strain. They have a home 3 hours away with 3 other children. They are have to make sure all the bills are paid at home and their children are fed and cared for. Then on top of that, there is the expenses of staying at UCLA. Parking alone is $12 a day. They are at the Ronald McDonald house and that is $10 a day. But the RMDH is an hour away so that is a 2 hour round trip, at least every day.
I am putting this fund together to help them with their stay so they can be with their son. Food, gas, lodging, medical expenses will add up fast. We do not know how long Drake will be in the hospital. This is a life limiting condition that will require lengthy hospital stays and ongoing medications and medical interventions. We are praying every day for baby Drake and so far he has proven to be a fighter. He is the bravest baby I have ever met.
Every little bit helps. Thank you for showing all your love and support for this brave little man and his parents.
Organizer
Jessica L Mccrumb
Organizer
Ridgecrest, CA
