As it turns out, Quintin’s case and the doctor we originally planned for were not a good match. She focuses more on hospice care and doesn’t work with ventilators. So it’s been the family mission the last few weeks to build a team of doctors from scratch. It has been very difficult to find the right people – ideally we’re looking for doctors who are able to come to Quintin, so he doesn’t need to be transported to doctors’ offices or hospitals for appointments. Not many doctors do home visits beyond hospice, and we’re not a hospice case.
We now have an internist, Dr. H, who is essentially the primary care doctor. He is a mobile doctor who constantly travels to see his patients all over western Washington. He comes to see Quintin almost weekly. The next priority has been finding a pulmonologist (lung doctor). He will be going to see a pulmonologist in early December who we hope will take him on long-term. We’re still searching for a neurologist and a speech therapist. He receives physical therapy and other treatments from nurses and therapists at the care home.
Quintin’s sodium level has slowly been going up and is now in the normal range. To maintain that level he’s on a liquid restriction, which also means he’s at more risk of a mucus plug developing in his chest. It’s a delicate balance but he’s done well so far. Overall he’s been much healthier here than he was in the hospitals. It’s rare for him to have a fever and he hasn’t had to deal with lung infections lately.
As we approach the Thanksgiving holiday we’re reminded to be extra grateful for family and friends, health and happiness.
