Today has been one of those days that I’m just grateful to have survived. With everything that happened today, I’m completely exhausted and fearing the future, at least what it has in store for Gavin.
I spoke with Dr. Moodley’s office this afternoon and let them know what happened today with Gavin’s crisis.
At this point they don’t want us to do anything different. We aren’t going to change his meds or adjust his fluid intake. We aren’t going to do anything. As a father this feels like a whole lot of sitting around and doing nothing.
Doing nothing feels wrong.
I’m beginning to feel like I might be frustrating or irritating Dr. Moodley because I’m calling him when these things happen. I’ve never gotten any indication of this, I just worry. Worrying is something that I excell at.
I’ve come to hate the absence of progress on the medical front. I hate being turned away because someone doesn’t think they can help him.
I hate watching my son collapsed on the floor from something that we can’t protect him from.
Sometimes I just feel broken. I feel helpless, hopeless and broken.
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Sounds like it’s time to find another doctor in a major city.
You’re in the backyard of New York, which has the best hospitals and research facilities in the world. Mount Sinai hospital has a whole section dedicated to children, as does NY University and Cohen’s Hospital on Long Island. All are affiliated with Ronald McDonald house, so you can surely find some relief with the travel expenses.
I know traveling with him will present it’s own set of problems, but I think these will pale in comparison to what you will face if you don’t find another specialist that’s more educated in the field.