Concerned

Dear Son spent most of the weekend sleeping although we managed to get in one small walk on Saturday and two on Sunday. Yesterday, he had a lot of choking issues-he seemed to choke on his saliva all day. I tried just about everything I could, making certain he was on his side, raising the hospital bed up high and sitting him up in the rocker. I worry he is getting sick again. It's not only the choking but the fact that he was extremely heavy yesterday, all dead weight. That's usually a telltale sign he's getting sick. At 180 pounds, that means that he is extremely hard to move. He can't roll over when he's well and when he's like that, it just about does me in. He also felt like he had a fever last night however I checked and he was fine. The ICU docs told me that they think Dear Son chronically aspirates any time he is lying down so I am concerned when I heard all of this choking. Last night, he yelled out many times during the night and there didn't seem to be anything I could do to console him. I hardly slept all night and neither did he.

In addition, he was supposed to have some labs drawn on Friday by a home health nurse. At discharge, they didn't tell me the agency name and while I could have called, sometimes, you hope things go just as they have set up, without my prompting every bit of the way. I have a friend who is a home health nurse and tried to have her draw them on Saturday however she didn't have any luck finding a good vein. Dear Son is pretty marked up from the hospitalizations and then add to that, the Scopolamine patch that dries up his secretions (also makes it hard to draw blood), it makes for a difficult draw. Dad will have to come over today and we'll have to take him to Big Academic Medical Center for the draws. He needs quite a few labs-5 seizure levels, plus CBC with differential, BMP and liver enzymes.

I finally finished nearly all of my medical paperwork from the hospital and in general for the last two weeks. There is always so much to do when I return home. Not only do I disinfect everything that was taken to the hospital and do all of the laundry but all emergency sheets are updated with the medicine changes, emergency bag is restocked, all medical records are updated with the surgery and hospitalization dates, everything gets filed, etc., etc. I have about five or six medical bills left that require some action but other than that, most of my paperwork is done. I probably did around twenty hours of paperwork alone over these past few days. That is my least favorite part!

I sent Dear Son to school today and hope things will improve.