Despite a brief hospital stay and then another ER visit this month, and ongoing pain and symptoms, Lowell is functioning better.
We are off to Boston for Lowell’s wish to meet Brad Stevens, coach of the Boston Celtics, granted by the Make-A-Wish Foundation. More on that when we are back.
Since returning from the Mayo Clinic at the end of January, Lowell has been moving in a positive direction. Pain is ongoing as are the sometimes confounding symptoms but we have been following the basic tenets of the Pain Rehabilitation Center (PRC) program to keep functioning despite these issues. For him, it is to go on with his day and not let these things derail him as they had in the past. For me, same-don’t change my day too much, don’t be a “pillow fluffier” (one who attends to every symptom and need or the opposite a “punisher”-well, that’s self-explanatory) Here are the basics of our current situation.
1. The struggle is ongoing about when to seek medical intervention, as Lowell’s Crohn’s is very serious and unpredictable. His disease activity needs to be closely monitored and part of the Mayo pain program was to ease up on the constant medical doctors. But like I mentioned in my post about the program, Lowell’s illness is a little different than the other participants and thus requires more vigilance. Finding the balance between tolerating uncomfortable symptoms yet knowing when to seek medical care is a daily challenge. In the 7 weeks we have been home, he has had two ER visits for pain, dehydration, nausea, vomiting, etc, and one visit of which resulted in an overnight stay.
2. They set the bar high when you leave Mayo meaning, they suggest a very regimented schedule, accounting for every waking and sleeping hour filled up with work/school, physical activity, socializing, sleep, deep breathing, hobbies, etc. It is almost impossible to do everything but I think it is a good idea that the goals are at this high level.
3. Lowell is working part time, staying active, back to playing piano, and still struggling to find people to hang out with as his friends are away in college.
4. My Connecting to Cure colleagues and I decided at the end of last year to take a break from Rock the Night in 2019. Everyone was burnt out, organizers, volunteers and talent. This was the best decision as every day I wake up and am so relieved that I am not calling silent auction donors to badger them for their items, plus all the other millions of things it takes to put on such event. We have a bunch of other things going on that we never had time to for before, and it feels good to have time for those projects.
5. I encourage Lowell’s little victories, while I am supposed to consequence things like when he doesn’t help around the house (walk the dog, wash the dishes, etc). Parents were encouraged to practice “warm neutrality” which is offering support but not jumping in to fix everything. I am doing a 50% job at the above. It’s still hard to watch your kid suffer. Remember when they were infants and had a cold and it was the saddest thing? It’s kind of like that but the feeling never goes away. But as always there is hope-new treatments and better coping-are all possible.
