Hello everyone. I know it’s been a while since I wrote a blog entry. I think the routine that we’ve been in has been pretty steady with slow progress so it’s not as eventful as some of our previous days. I think that’s an excellent situation to be in!
At the end of the last blog, Rob had a trip to the Dell ER in order to figure out what was going on. They decided that the delirium and hallucinations were either caused from “Hospital Delirium” or from the high ammonia levels. I’m happy to report that after treating the ammonia for a couple weeks, Rob’s delirium is basically gone. Hooray! I really think ammonia was the issue even though some people still think it’s hospital delirium. But it’s gone now and hasn’t come back since then, so we will take the win no matter what the cause!
My long time friend Randy came to stay with us. He is an epidemiologist. It’s always fun to have different specialty people in the house as they are great at giving us insight into different areas of Rob’s status or treatment. In addition, Randy is an excellent horticulturist and did an excellent job of helping update our front flowerbeds. I’m crossing my fingers because every time we plant something there, it dies. So I’m hoping this time we have the right plants and the right compost and the right watering schedule! Anything else I should be worried about there, Randy?
Rob has been making some great progress. I think I wrote before that he had started taking bites of food to practice swallowing. His swallowing reflexes and muscles have been improving. He still sometimes aspirates some food. But the speech therapist is outstanding and they are working on everything quite a bit. In fact this week, Rob had another swallow test that showed all the improvements. And so they approved him for eating a meal plan. Wow! What progress! So now Rob gets to have a meal tray three times a day. With “puréed” meals. I was there this week, he actually took 10 bites of a dinner tray. And had barely any aspiration or coughing. Way to go, Rob!!!
I want to acknowledge my son Spencer here this time. He has been such an enormous help and support to me specifically and to our whole family. I’m not sure what I would have done without him here the past few months. Anyway, he is taking a much needed break. He left the day after Randy arrived to take a wonderful trip with his BFFs Nico and Oliver. They have been friends since kindergarten and it’s so heartwarming to see their continued friendship. They are in South America, doing all sorts of things, including hiking in Patagonia. Have fun. Be safe! Help each other!! (That is my catchphrase that I tell the boys whenever they leave.)
I do have a bit more to update you on, but I want to get this published for now. So I promise to update again soon.
For now, please enjoy the following video. Who knew eating could be such a treasured exciting activity! Love to you all!
How wonderful to hear Rob talking and see him eating! Go Rob. Much love.
Carrie Krause
That is so wonderful to see him eating and talking and being in good spirits. A big yay for the good progress made and end to the delirium. Also happy to hear about Spencer taking a fun break. Best wishes on the progress to continue.
I got the feeling that Spencer really is a genuinely awesome person.
Runs in the family I guess.