Today was uneventful…let me just say that Lennon without his tenex during the day is more than a handful (which he did yesterday) and with tenex he is a handful. What is tenex? Well, it is a blood pressure medicine like clonodine, but in children it works for behavioral issues with a less sedating factor like the clonodine. I think the tenex wore off around 3:30 to 4 p.m. which is sorta new but I think the elevated ammonia is contributing a lot and could affect some of the medication he’s taking. He was able to play video games today which kept him occupied and mostly calm until I made him take some breaks in between. He was not a big fan but he dealt with it.
Lennon did acquire a cold which doesn’t surprise me but hopefully it won’t affect him too much other than just a runny nose. So in all we have just been hanging out trying to stay entertained.
The biopsy is scheduled for 10 a.m. on Monday which means tomorrow they will do a full lap work up and see what he may need as far as plasma and platelets. And then it will just be another day that we will hang out.
Overall he is in good spirits and coping being cooped in the room. He’s still under isolation because the VRE is still lingering and has not moved on to better things.
I know some folks are concerned how I am holding up, as well as everyone else. I’m ok! I am just taking it minute by minute trying to get through the day. I don’t want to speculate on the outcome of the biopsy too much because that wouldn’t do me any good right now. I am taking things as they come. I’ve been trying to keep busy while Lennon keeps everyone else occupied.
Tentatively we may have some preliminary results on Monday but a full report towards the end of the week. They will keep Lennon for an additional day or so for observation to ensure he doesn’t start bleeding and is handling everything okay.
Lennon steps here we are and go!