Prepping to take Kate to the world-renowned Mayo Clinic was a detailed and time-consuming process. We had little to no medical coordination at CHEO, and though our pediatric consultant Dr.S was wonderful, he could not access Kate’s medical records at CHEO, nor did he have the time to review all the material and determine what should be sent in advance or compiled in a medical binder to take with us. He sat down with me in early August and we reviewed all the information that should be sent to Mayo Clinic in advance of our visit.
- Medical History
- Metabolics and genetics history, testing, results
- Gastroenterology, including feeding studies and GERD studies
- Audiology and ENT
- Recent bloodwork
- MRI results
- CT results
- Ultrasounds, and urodynamic studies
- Bone marrow biopsy results
- Muscle biopsy results
- Previous and current medications
- Syndromes, diseases, and genetic conditions already tested for
It was a long list and clearly portrays a medically complicated little girl. Now it was up to me to compile all of this information in a coherent and organized way to send to the Mayo Clinic. I started with visiting medical records and making photocopies of relevant material from Kate’s medical record. Over the previous 18 months I had gained a good appreciation of what notes were relevant (to other medical professionals) and which were not – so I started in this fashion and tagged anything I felt I might need from her (then) 6 volume chart. I was pleased that the manager of medical records was supportive and understanding. She did all the photocopying for me. Then I was off to visit diagnostic imaging to access and get a copy of all Kate’s tests. That took a bit longer and required a requisition from a physician (which I had from Dr.S). I was finally handed a CD that contained all of Kate’s diagnostic workup since she had started to ‘get sick’. All other results were in Kate’s medical record, so I was now ready to pull together her binder of information.
While Kate’s Mayo Clinic binder was being organized, I had begun coordinating with OHIP, our provincial health insurance plan here in Ontario, to determine how Kate’s visit would be covered financially. We knew this could be a very expensive visit to an American hospital and wanted to be clear as to how to manage the visit and any tests/procedures/diagnostic work up that were requested while we were there. Once they had deemed Kate’s visit to Mayo would be fully covered, OHIP put us in touch with a 3rd party health care coordinator for Canadian patients abroad. The role of this coordinator was to vet any and all tests requested while were there. We weren’t supposed to do anything before consulting them first as a simple blood test could run into thousands of dollars. The importance of their role was very clear to us as on our first day at the Mayo Clinic, we were sent to the finance department before we even registered as patients and my Visa was put on file on an “as needed” basis. (Scary).
The next important part of planning the trip was support for our family. I would need a back up while in Minnesota. There was no way I was going to be able to manage Kate (then 2), provide complex and complicated medical history, listen to the experts I was meeting with, and take notes during my meetings. Thankfully my mom offered to come with Kate and I. As a former nurse, she has a keen ear for what is important to record during these meetings, and I valued having another person with me – especially my mom. We were also offered some financial support for the trip – which was very welcome. We didn’t know what we were getting into and were thankful for the offer to assist with the accommodations. As for my 5-year-old son, he’d be home with Dad and his much adored (and adoring) grandfather. I took the time to write him a series of short letters – one to open for each day I was away. I was tough to be gone from him and the comforts of home.
We were ready to go – and it seemed Mayo was ready for us. We received letters in the mail detailing the ‘itinerary’ of our visit which would be about 7 days. We were to meet with several specialists, but oddly metabolics/genetics was not on the list – and ENT was. This omission gave me pause, but then I thought this area was likely covered as part of our initial meeting because of its vital importance to Kate’s case, and I did not inquire further. Kate’s physicians and covering letters were all very clear that she had a suspected metabolic condition so of course metabolics was going to be at the center of the consultation (?) As for ENT, there was no question about Kate’s hearing loss and I was unsure as to what more they would have to offer us, but we did not inquire and kept them on the list of specialists to see.
On Monday, October 19th we flew to Rochester Minnesota and settled in to our hotel apartment. Groceries were the first course of action as Kate was a very fussy eater and still had difficulty with many foods. Finding what she could eat could be a challenge. At that time she was huge on a pasta called gnocchi. It was pretty much all she ate. I prayed we could find that in Rochester (and we did). Gnocchi in hand (seriously, it was a BIG deal), we were ready for our week.
Tuesday, October 20th we entered the Mayo Clinic for the first time. Wow. Glass and architecture, beautiful artwork, large comfortable sitting areas, cafes and restaurants, shops, and a baby grand piano in the atrium where invited pianists came to play for the patients. It was impressive. It made me feel like this was ‘the place’, somewhere as beautiful and impressive as this must have the answers we were looking for. Thoughts ran through my mind…”we are so lucky to be here”, “the doctors must the best here”, “we should have come sooner”.
We made our way to the general pediatric area and met with Dr.Lloyd, the medical coordinator for Kate’s visit. Dr.Lloyd’s role was to be the ‘quarterback’ for all the specialists Kate would see at the Mayo Clinic. Kate’s vitals were taken and we sat for a full hour discussing in great detail her medical history. Repeating Kate’s medical history for more than the hundredth time was exhausting, but it was early in our week and I knew it would set the tone for the rest of the visit, so I was careful to tell the entire story to date. Not surprisingly, Dr.Lloyd was concerned about the omission of metabolics from the list of specialists and had them added as a consult. This was a concern for me and my instincts kicked in with a bad feeling at this oversight which I had suspected but then dismissed.
How would this visit go? Would the impressive Mayo Clinic really be able to help us if they had missed something this obvious?
Dr. Lloyd then proceeded to prepare us for the week to come and the discussions we would have. It was her opinion that we had excellent care and a great work up done in Canada. She wanted us to be realistic in our expectations about what the Mayo Clinic could offer as more insight into Kate. This was the second bad feeling I had in a matter of one initial visit – it sounded like they had already determined there might not be more they could offer us.
We left with an itinerary for the next few days, and feeling cautiously hopeful for new insight into Kate.