Just wanted to share a quick update below. Our last update seemed heavy (I just reread it, yikes!) and just wanted to provide some information on the latest and greatest in our journey with Brad’s chronic illness. 

As far as medical decisions, late November we proceeded to have an NJ tube placed to see how Brads body tolerated tube feeds and if there was any improvement in his symptoms. The tube feeds helped keep his pain minimal (3-4/10 on his pain scale), but because it goes into his intestines and not his stomach, he feels STARVING. So he’s either minimally painful and hungry, or finally breaks down and eats something and is then in excruciating pain. However, the tube has provided immense relief for Brad and his internal struggle to keep eating so he doesn’t get so weak. Now, he is able to eat when or if he wants, but we know he’s getting all the nutrition from the tube feeds. On Wednesday, he had a permanent J tube placed through his abdomen and the NJ finally removed! He tolerated the procedure very well, staying just one night in the hospital and coming home this afternoon. 

We did meet with another pain doctor and GI specialist from Cleveland in November and December (still not wanting to give up hope!), but nothing has provided Brad with any relief. At this point, we expect this to be Brads new normal. 

We’ve made some big family decisions based on the most recent events. As I’ve stated before, Brad loves his girls immensely and is such an amazing dad. He also loved his job at Make-A-Wish. However, it became too difficult for Brad to continue working full time and so we decided to switch roles. It was so difficult for him to say goodbye to Make-A-Wish, it was truly his dream job. If a miracle ever happens, he would love to return there. Brad will now be a stay at home dad full time and I start working full time next week!

Currently, I work part time in labor and delivery and begin teaching Calvin nursing students next week. However, the big news is that I have accepted a new position within University of Michigan Health-West and will transition to being full time in our OB/Gyn office at the end of February. I’m very excited, but also cannot believe I’ll be leaving the labor and delivery floor where I’ve been for 10 years. So, not only am I going from part time to full time, I’ll be working more days during the week and I think that transition might be difficult for myself and the girls. In the long run, it will be so good for our family!! Pray for smooth transitions all around! 

Brad is my hero. There is such a sense of peace about him. I think just focusing on our family and his health will be so good for him. As always, we could not do this without the incredible support from family and friends - you know who you are! 

We love you all ❤️ 

Brad and Amanda