Help for Odin
Donation protected
We would like to introduce everyone to our son, Odin. He has been in the world an extremely short period of time but has already had to face some extraordinary hurdles. Unfortunately he will need to continue fighting for some time to come.
Odin was born on Sunday January 27th by caesarean due to being breeched. Thankfully mom and son were in great shape after the surgery. Monday was a fairly normal after delivery day, bringing all the joys a newborn brings to new parents and their families. 9 months of anticipation overflowing into the love we feel for this bundle of joy. Such a little guy has stolen the hearts of so many in no time at all.
Tuesday we were expecting to have Odin circumcised and have all his final examinations completed. Dismally during his circumcision things took a drastic turn. There were complications with his heart during the surgery. We sat in our room awaiting the return of our son unaware of the situation unraveling. We expected the nurse to be walking in the door with Odin assuring us how great he did. Instead here came a doctor and nurse without our son explaining that he was having heart complications and that he was being prepared for transport to another hospital better equipped to handle pediatric cardiology because he has a condition called cardiomyopathy which is a rare and could require a heart transplant. Any words beyond that fell upon deaf ears. Our worlds crashed down at that instance. Panic set in and blackness took over us in waves of emotions. Mom demanded to be discharged as she was not going to be separated from the child that needed both his parents right now. Although the medical staff advised against discharge due to the recent C-section ultimately they ended up doing so.
Cardiomyopathy is a rare chronic heart condition that involves the deterioration of the heart muscle. The heart muscle becomes abnormally enlarged, thickened, and or stiffened. Eventually the heart is unable to pump effectively and can not supply the body with enough blood to function. Currently, Odin is experience the fatigue from the lack of blood being pumped through his small fragile body. He sleeps a lot and is unable to nurse properly or for long periods of time due to his tiny heart being overworked.
At the second hospital, Odin was evaluated more in depth and it was determined that being transferred to a children’s hospital would ultimately be the best care he could receive. So yet again Odin was transferred by ambulance to a third hospital. He is receiving amazing care from the team here at the children’s hospital. He has an uphill battle as they try to determine the best course of treatment for him and the extent of damage to his heart. They are trying various medications in hopes he will respond to them but are not taking the need for a transplant off the table.
As any other parents would do, we are on board with whatever course of treatment will save our son’s life. No cost is too great, no need out of reach for him to have the best quality of life. Unfortunately, we are have to be realistic as well. The insurance company may not cover all the costs incurred. From two ambulance transports to mom’s discharge against medical advice to medications not covered. Also Dad will be taking extra time off work so that we can be with Odin every step of the way. There will be many more long hospital stays ahead of us before we can take him home. We are asking for any financial help that can be given to us in this time. We are away from home so we can be with Odin. We are having to pay for meals instead of being able to shop and cook our own. Hours of working are being lost and the upcoming medical expenses will enormous. If you can find it in your hearts and are able to help us in some way it would be greatly appreciated. If you are unable to make a financial contribution, prayers for his health is equally appreciated. We would like to thank you for taking the time to read Odin’s story. Every moment in life is precious. Thank you for any contribution, whatever its form, you are kind enough to extend to us.
Thankful and indebted,
Angel and Michelle
Odin’s proud parents
Odin was born on Sunday January 27th by caesarean due to being breeched. Thankfully mom and son were in great shape after the surgery. Monday was a fairly normal after delivery day, bringing all the joys a newborn brings to new parents and their families. 9 months of anticipation overflowing into the love we feel for this bundle of joy. Such a little guy has stolen the hearts of so many in no time at all.
Tuesday we were expecting to have Odin circumcised and have all his final examinations completed. Dismally during his circumcision things took a drastic turn. There were complications with his heart during the surgery. We sat in our room awaiting the return of our son unaware of the situation unraveling. We expected the nurse to be walking in the door with Odin assuring us how great he did. Instead here came a doctor and nurse without our son explaining that he was having heart complications and that he was being prepared for transport to another hospital better equipped to handle pediatric cardiology because he has a condition called cardiomyopathy which is a rare and could require a heart transplant. Any words beyond that fell upon deaf ears. Our worlds crashed down at that instance. Panic set in and blackness took over us in waves of emotions. Mom demanded to be discharged as she was not going to be separated from the child that needed both his parents right now. Although the medical staff advised against discharge due to the recent C-section ultimately they ended up doing so.
Cardiomyopathy is a rare chronic heart condition that involves the deterioration of the heart muscle. The heart muscle becomes abnormally enlarged, thickened, and or stiffened. Eventually the heart is unable to pump effectively and can not supply the body with enough blood to function. Currently, Odin is experience the fatigue from the lack of blood being pumped through his small fragile body. He sleeps a lot and is unable to nurse properly or for long periods of time due to his tiny heart being overworked.
At the second hospital, Odin was evaluated more in depth and it was determined that being transferred to a children’s hospital would ultimately be the best care he could receive. So yet again Odin was transferred by ambulance to a third hospital. He is receiving amazing care from the team here at the children’s hospital. He has an uphill battle as they try to determine the best course of treatment for him and the extent of damage to his heart. They are trying various medications in hopes he will respond to them but are not taking the need for a transplant off the table.
As any other parents would do, we are on board with whatever course of treatment will save our son’s life. No cost is too great, no need out of reach for him to have the best quality of life. Unfortunately, we are have to be realistic as well. The insurance company may not cover all the costs incurred. From two ambulance transports to mom’s discharge against medical advice to medications not covered. Also Dad will be taking extra time off work so that we can be with Odin every step of the way. There will be many more long hospital stays ahead of us before we can take him home. We are asking for any financial help that can be given to us in this time. We are away from home so we can be with Odin. We are having to pay for meals instead of being able to shop and cook our own. Hours of working are being lost and the upcoming medical expenses will enormous. If you can find it in your hearts and are able to help us in some way it would be greatly appreciated. If you are unable to make a financial contribution, prayers for his health is equally appreciated. We would like to thank you for taking the time to read Odin’s story. Every moment in life is precious. Thank you for any contribution, whatever its form, you are kind enough to extend to us.
Thankful and indebted,
Angel and Michelle
Odin’s proud parents
Organizer and beneficiary
Pedro Chitown Bean Santiago
Organizer
Chicago, IL
Michelle Santiago
Beneficiary