So, this weekend Lennon wasn’t feeling well. He appeared to have a lil stomach bug maybe, ran a fever and had some major diarreah. This morning they told me he is still postive for VRE, which has me a little frustrated and so I am making the push to go home. 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 has to be about Lennon, but I just don’t know how much more I can handle at this point. I do belief that ones he comes home, and is in a non-sick environment he will do better. Who wouldn’t?
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 know this probably sounds incredibly self-fish since Lennon is the one that needs the care, but again they are not doing anymore than I couldn’t do at home.. I am trained through the state as a medication aide, I know how to take vitals and I know how to get him to the docs to draw labs and go to therapy.
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 utelize 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 whereever 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.