So, this weekend Lennon wasn’t feeling well. He appeared to have a
Other than the therapies in the morning, they aren’t doing anything I wouldn’t do or couldn’t do at home. I do know that living in isolation/contact precaution can’t be helping the situation. So his case manager is going to order the feeding pump. I know that most of this
I just don’t know how much more I can handle…being away from home…being away from my other kids…being away from my normal life
I am frustrated over the VRE situations…and battle in my head with the CDC because now he “cant” be tested again until I think 2 months from 2-25 which to me appears almost rediculous. Since he appears to be still a contact issue, I feel he would fare better at home.
There we won’t have to wear gown and gloves but utilize universal standard precautions..come to think of it..my kids will really learn what it means to wash their hands! He will be able to go outside, play in his room, hang out in the living room, in other words, he will have free reign. Then again, I am probably the one with the problem because all I have to do is gown up and we can go wherever we want.
I have been upset this past week, and today everyone seems to be overly concerned. I mean c’mon what do they expect, he was admitted on Nov. 18th…and this is March 2nd. Lennon’s care will not falter simply because we would be at home. We may qualify for a medicaid waiver in which we can have a skilled nurse come to the house. Our working hours allow us to be with Lennon around the clock just about. The feedings and the feeding schedules can be adjusted at home, via telephone, via e-mail and via doctor visit. Of course this means we may be on the road a lot for therapies and doctor visits, but then again maybe we can do it twice a week to line up with his lab days.
Lennon is still far away from going back to school, but he will have school at home. I just think he would be so much happier and not feel like he’s sick. He’s been so chronically sick that he may have a hard time feeling well in the hospital. Kluge isn’t like the actual hospital but it is the same/similar setting it can make it tough to feel normal and well.
So yes I am pushing to go home.