Hi Lyle, it was both insightful and scary to read your piece. We welcomed our son James at the beginning of January 2021 via a planned c-section at 38 weeks, he was a happy healthy baby for about 2 hours since he was born. Then when the nurse was checking his blood sugar, he was not breathing at that moment for a period of time. Doctors was able to resuscitate him, the story since that was very similar to your daughter, he was on breathing machine for the first two weeks, now with a feeding tube through the nose. Later after first MRI at day 4 and second MRI at day 14, drs told us he has a moderate brain damage to his basal ganglia and at his brain stem. and likely he'll have cerebral palsy and some cognitive impairment in the future. We are currently working on feeding in order to bring him home. We are trying to stay hopeful but terrified of the grim quality of life for him in the future. Your piece gave me a bit of what that future might look like. I just want to reach out to you and see if there's anything you wish you knew before that you want to share, that would be immensely helpful for us. Thanks.
Hi Sam, thank you for sharing your story. I imagine that was difficult to write. Your words took me back to the moment you’re in right now. I know exactly how you feel. I even read it aloud to my wife and she started crying. Our hearts go out to you and your family.
It sounds like the situation with your son is very similar to ours with our daughter.
One sort of practical thing I wish I knew back then was that we should’ve done the g-tube surgery before coming home. But I’m reluctant to give that advice without knowing more about your situation.
One other thing that comes to mind is around expectations. You’re likely going to need to adjust them going forward. This is sort of a silly example, but I’m a huge golf nerd and had visions of teaching Em to play, but that’s almost certainly out the window now. It’s okay though. As long as she can be as happy as possible, that’s what’s truly important.
Another thing is asking for help. Whether it’s from family or all the various services your son will qualify for, don’t hesitate to ask. You’re going to need all the help you can get. This goes for physical help caring for him, but also mental health. The fact that you commented here is a good sign that you’ve got this one covered, so good job there. I know how isolating it can feel at the hospital like you’re in a bubble the rest of the world doesn’t quite understand.
Here’s my email if you’d like to chat via email or trade phone numbers for a call: lyle.mckeany@gmail.com. I hope you reach out sometime, but no pressure. Hang in there, Sam.
Hi Lyle, it was both insightful and scary to read your piece. We welcomed our son James at the beginning of January 2021 via a planned c-section at 38 weeks, he was a happy healthy baby for about 2 hours since he was born. Then when the nurse was checking his blood sugar, he was not breathing at that moment for a period of time. Doctors was able to resuscitate him, the story since that was very similar to your daughter, he was on breathing machine for the first two weeks, now with a feeding tube through the nose. Later after first MRI at day 4 and second MRI at day 14, drs told us he has a moderate brain damage to his basal ganglia and at his brain stem. and likely he'll have cerebral palsy and some cognitive impairment in the future. We are currently working on feeding in order to bring him home. We are trying to stay hopeful but terrified of the grim quality of life for him in the future. Your piece gave me a bit of what that future might look like. I just want to reach out to you and see if there's anything you wish you knew before that you want to share, that would be immensely helpful for us. Thanks.
Hi Sam, thank you for sharing your story. I imagine that was difficult to write. Your words took me back to the moment you’re in right now. I know exactly how you feel. I even read it aloud to my wife and she started crying. Our hearts go out to you and your family.
It sounds like the situation with your son is very similar to ours with our daughter.
One sort of practical thing I wish I knew back then was that we should’ve done the g-tube surgery before coming home. But I’m reluctant to give that advice without knowing more about your situation.
One other thing that comes to mind is around expectations. You’re likely going to need to adjust them going forward. This is sort of a silly example, but I’m a huge golf nerd and had visions of teaching Em to play, but that’s almost certainly out the window now. It’s okay though. As long as she can be as happy as possible, that’s what’s truly important.
Another thing is asking for help. Whether it’s from family or all the various services your son will qualify for, don’t hesitate to ask. You’re going to need all the help you can get. This goes for physical help caring for him, but also mental health. The fact that you commented here is a good sign that you’ve got this one covered, so good job there. I know how isolating it can feel at the hospital like you’re in a bubble the rest of the world doesn’t quite understand.
Here’s my email if you’d like to chat via email or trade phone numbers for a call: lyle.mckeany@gmail.com. I hope you reach out sometime, but no pressure. Hang in there, Sam.