We met with the in patient Social Worker to discuss some of the programs that are available to us to help support us while Owen is in the hospital and in between hospital stays. We can get reimbursed for traveling expenses when I go between Milwaukee and home. We will probably have to enroll Owen in the Birth to Three program to get him assessed for development. He will get occupational, physical, and speech therapy if his development is lagging. We actually ended up talking a lot about IRIS because Cassie and I work with my brother Jason through IRIS. The social worker said that she has a lot of people asking if they can become care providers for their children and she has given them numbers to call to check it out and no one really updated her on it.
We got an update from one of the doctors after they came around for rounds (there were here while we were talking to the social worker). First of all she apologized that she didn't inform us that the geneticist was going to be stopping by. Yesterday when they called the genetics department it didn't seem like they were too concerned with doing further testing on Owen to rule out MSUD. They are planning on weening Owen off of the ventilator support today to make sure that he can handle it. If he does well with that, they might be able to take him off the ventilator tomorrow. She also said that his lungs looked a lot better this morning on the x-rays than they did yesterday. As long as he doesn't have too much fluid in his lungs and they have a different blend of medications this time hopefully he will be able to tolerate breathing totally on his own.
My Identity
9 years ago
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