cswhitchurch
MVP
My cousin had a child who was born with a rare congenital heart condition, HLHS. Her first open heart surgery was the day after she was born-- the 2nd surgery took place when she was 4 months old, and the 3rd and final surgery was done a few months ago-- and deemed successful. This series of 3 surgeries is the only known treatment for HLHS other than a heart transplant-- otherwise, the condition was always fatal.
I took care of this sweet child full-time when her mom went back to work after 6 weeks. I cared for her through the 2nd surgery and for most of the first year of her life. It was highly stressful at times, because she required a lot of specialized care due to her extremely precarious condition. When I moved to go back to school and took a job nannying for another family, I would find myself randomly running to the bathroom to cry-- I was crying all the time, for reasons I couldn't fully understand-- but I almost felt like a mother who had lost her child. The bond I formed with that baby was so strong. Fortunately, she is part of my family so I've been able to remain a part of her life
Her parents understood the bond and would periodically ask me to babysit for her, even overnight sometimes.
She had been sick for a few days prior and I don't know what changed, but two days ago she was rushed by ambulance to the hospital. While she was there, she had 3 cardiac arrests and had to be revived. The local hospital, although it is known for it's state of the art Heart Center, was not equipped to treat her but she was not stable enough to be transferred to the hospital where she received all of her prior treatment. So the pediatric cardiology team from that hospital, along with a surgeon, came by helicopter to our local hospital. They were able to get her stabilized enough and she was airlifted with them back. While she was there, she apparently had another cardiac arrest and.... she didn't make it. They put her on life support for 72 hours, at which point they'll do a final scan to check for any brain activity.... but the doctors are saying there's really not much hope.
I don't think I have ever felt sadness like this in my entire life. I have not been able to stop crying for two days now, so I have been sleeping as much as possible to avoid the pain of being awake. Tomorrow, I am going to the hospital. I do not want to go, but my cousin said it would be a comfort for her so I am going. I cannot imagine how much worse her pain must be than mine-- and I can't comprehend how it would be possible to feel pain on that level without losing one's mind. It is incomprehensible.
I have fumbled my way through helping patients who are grieving.... the best thing I've found is to just be ok with silence. Because sometimes there are no words, but having someone to sit with you can be a comfort. Beyond that, is there anything I can say tomorrow that might be comforting to my cousin? Is there anything I should absolutely NOT say? Tomorrow is the day they will probably be removing the life support so it's going to be extremely difficult and I am going to be in a very bad state myself, I'm afraid.
I took care of this sweet child full-time when her mom went back to work after 6 weeks. I cared for her through the 2nd surgery and for most of the first year of her life. It was highly stressful at times, because she required a lot of specialized care due to her extremely precarious condition. When I moved to go back to school and took a job nannying for another family, I would find myself randomly running to the bathroom to cry-- I was crying all the time, for reasons I couldn't fully understand-- but I almost felt like a mother who had lost her child. The bond I formed with that baby was so strong. Fortunately, she is part of my family so I've been able to remain a part of her life
Her parents understood the bond and would periodically ask me to babysit for her, even overnight sometimes. She had been sick for a few days prior and I don't know what changed, but two days ago she was rushed by ambulance to the hospital. While she was there, she had 3 cardiac arrests and had to be revived. The local hospital, although it is known for it's state of the art Heart Center, was not equipped to treat her but she was not stable enough to be transferred to the hospital where she received all of her prior treatment. So the pediatric cardiology team from that hospital, along with a surgeon, came by helicopter to our local hospital. They were able to get her stabilized enough and she was airlifted with them back. While she was there, she apparently had another cardiac arrest and.... she didn't make it. They put her on life support for 72 hours, at which point they'll do a final scan to check for any brain activity.... but the doctors are saying there's really not much hope.
I don't think I have ever felt sadness like this in my entire life. I have not been able to stop crying for two days now, so I have been sleeping as much as possible to avoid the pain of being awake. Tomorrow, I am going to the hospital. I do not want to go, but my cousin said it would be a comfort for her so I am going. I cannot imagine how much worse her pain must be than mine-- and I can't comprehend how it would be possible to feel pain on that level without losing one's mind. It is incomprehensible.
I have fumbled my way through helping patients who are grieving.... the best thing I've found is to just be ok with silence. Because sometimes there are no words, but having someone to sit with you can be a comfort. Beyond that, is there anything I can say tomorrow that might be comforting to my cousin? Is there anything I should absolutely NOT say? Tomorrow is the day they will probably be removing the life support so it's going to be extremely difficult and I am going to be in a very bad state myself, I'm afraid.
