Okay, I noticed that in the last several days it helped me to share some of my frustrations with friends who understand our situation and some of its limitations. I'm sharing this now to make myself feel better, and to give a glimpse of our daily ups and downs to others who pray for us and want to understand. So here goes...
In Cincinnati we have one lead doctor, a nurse-practitioner, and a nurse coordinator who help us communicate with that doctor. Of course she is backed up by an excellent team of other doctors, and there are other wonderful NPs and nurses, as well as child-life specialists, social workers, a speech pathologist, nutritionists, etc. Every time we went in for clinic or infusion visits we were seen by a doctor - many times someone else, as our doctor travels internationally on a regular basis. One of my favorite doctors was a hematologist who always wanted to take Nathanael home with her! We also had great experiences with other teams: the pain team docs and nurses, the CVC (central venous catheter) team nurses, the lactation nurses, the pharmacists, radiologists, and many others. They all answered to our doctor, who is both an immunologist AND a blood/marrow transplant specialist, and who handles MANY transplants for children with rare immune deficiency diseases.
Here in Dallas we have a BMT doctor in the Center for Cancer and Blood Disorders, a nurse coordinator, and a team of residents/fellows/nurse practitioners. We also have an immunologist (in the Outpatient Pavilion) who has another nurse coordinator and a team of nurse practitioners. Additionally we have now been referred to a dermatologist (outside the hospital), a team of endocrinologists (inside the hospital), and a general surgeon (who handled the surgery a few weeks ago), as well as the team in Special Procedures, where immunology patients go to get infusions. What's difficult for me right now is that I feel like we have a team with no quarterback...so I end up taking the snap every time. What's the problem, you may ask? I AM NOT A MEDICAL PROFESSIONAL!!!
I realize that our situation may have been complicated by our choice to have the transplant done somewhere else, but I still have no regrets about that choice. I recently found something on the website of a family whose sons had bone marrow transplants at Cincinnati Children's (our visits overlapped a little last year, though I didn't know the family personally), and after losing both sons to the same rare disease they have started a foundation in memory of their boys. Their story is gut-wrenching (get the tissues if you plan to check out their site), but the description of their decision to start fund-raising for an outpatient housing area for transplant patients at CCHMC really sums up much of what we love about the hospital. Below is the link:
http://www.matthewandandrew.org/why-cincinnati-childrens.html
"In addition to the knowledge, we thought the team approach to rounds was extremely important and helped reduce the rate of error. By having a doctor from each discipline present, everyone was able to discuss the issues, concerns and plan for each day. Daily rounds typically consisted of between 12-15 people."Here are two quotes they used from the CCHMC websit that really stood out to me:
"Our multidisciplinary team has performed more than 1,300 transplants in the program’s 20-year history - currently about 80 children each year. In 2009, our experts performed 93 transplants- making us one of the largest programs in the United States."
"The immune deficiency and histiocytosis team at Cincinnati Children’s treats patients with more than 80 different kinds of immune deficiency and histiocytic disorders. Our physicians have developed treatment regimens that improve survival and are now the international standard of care. These specialists manage each stage of patient care, from immunologic testing to bone marrow transplant, if needed."
http://www.cincinnatichildrens.org/svc/alpha/c/cancer-blood/bone-marrow/default.htm
Having said all that, I do understand that it must be a challenge to be the "caretaker" doctor for someone whose lead doctor is out-of-state, and not available for questions. When I call Cincinnati I almost always talk to the BMT/Immunology Nurse Coordinator (I should have his number on speed-dial by now!) and if he's not around I call our nurse practitioner. They both have access to our doctor, and ask her all the questions they can't answer for me themselves. However, everyone involved in the situation presumably agreed to their assigned role, and I thought that also meant they agreed to communicate with the others involved in Nathanael's care.
If you're still with me, thanks for listening! I don't expect everything to be easy, but there are challenges to our current situation that are different than I had expected...and it helps me to share this with friends so I don't feel so alone.
Bree
