Our visit to Children's
So, we went to Children's today, and now I have some idea how all of that works. Basically, there's 24x7 visiting hours for parents and grandparents. Everyone else should try to come between 8 and 9:30 (although we can specify other people if we want to, they really try to keep it to something like a minimum, just because there are so many families already there, and because they're really strict about security). Amy and I will make every effort for at least one of us to be there during those hours, because they really prefer for us to be there when other visitors show up. There's parking there, in an underground garage that you can access from Livingston Avenue. When we check him in, we'll be setting up a password, and we'll share it with all of you, not via blog. If you don't have the password, you can't get a visitor badge, and so you can't come up.
The biggest no-no is people who are or have been very recently ill. So, once he shows up, he's likely to be there for about a month. If you're sick at some point in that month, Amy and I appreciate your intentions, but please, stay away. The rooms are all private, and while parents can sleep there, they encourage us to take care of ourselves too. There's a little play room, but if you have little ones, it's probably best to keep them in away entirely.
The team there is like 3 health care coordinators, the lady who liaises between Children's and Riverside, the doctors, a social worker (to help if we need it with getting whatever we need to from the state and/or county) and a concierge. She basically does stuff like helps to make sure we understand what forms to fill out and makes sure that we're doing OK. They also have a program to coordinate with other parents who have gone through stuff like this, if we want to, to help us out and share their experiences. We're not sure if we're doing that yet, but there it is.
After he comes home, basically everything should be normal, for a given value of normal. He'll be on medication for, basically, his life. Until he's 2, it's likely that he'll get monthly shots from around November through April to build up antibodies against a specific illness that most of us don't recognize as anything other than a cold. For him, it could be serious enough to send us back to Children's. After that, we'll be meeting regularly, but not constantly, with a cardiac doctor just to keep an eye on everything.
That's the 5 minute update on what's going on with regard to all of that. After I get my thoughts a little better organized, I'll probably post something else about it. Current parents of small children, we're open to suggestions on pediatricians if you're familiar with someone who's awesome. Because that's likely the next big medical thing we need to figure out.
The biggest no-no is people who are or have been very recently ill. So, once he shows up, he's likely to be there for about a month. If you're sick at some point in that month, Amy and I appreciate your intentions, but please, stay away. The rooms are all private, and while parents can sleep there, they encourage us to take care of ourselves too. There's a little play room, but if you have little ones, it's probably best to keep them in away entirely.
The team there is like 3 health care coordinators, the lady who liaises between Children's and Riverside, the doctors, a social worker (to help if we need it with getting whatever we need to from the state and/or county) and a concierge. She basically does stuff like helps to make sure we understand what forms to fill out and makes sure that we're doing OK. They also have a program to coordinate with other parents who have gone through stuff like this, if we want to, to help us out and share their experiences. We're not sure if we're doing that yet, but there it is.
After he comes home, basically everything should be normal, for a given value of normal. He'll be on medication for, basically, his life. Until he's 2, it's likely that he'll get monthly shots from around November through April to build up antibodies against a specific illness that most of us don't recognize as anything other than a cold. For him, it could be serious enough to send us back to Children's. After that, we'll be meeting regularly, but not constantly, with a cardiac doctor just to keep an eye on everything.
That's the 5 minute update on what's going on with regard to all of that. After I get my thoughts a little better organized, I'll probably post something else about it. Current parents of small children, we're open to suggestions on pediatricians if you're familiar with someone who's awesome. Because that's likely the next big medical thing we need to figure out.
Comments
Post a Comment