Well I meant to write this from my couch at home a week ago but I guess a hotel bed the night before will have to do!
Needless to say, we made it to Rochester and will be ready to go to the Mayo Clinic in the morning. Now, you might be asking, what are you doing down there? Good question.
Where are we?
This week, Easton will be participating in the Mayo AERODIGESTIVE Clinic. The Aerodigestive Clinic is a group of specialized departments who come together and collectively evaluate a patient. AKA, doctors who work together, which is pretty rare. If you have ever dealt with multiple doctors or specialists, you probably realized pretty quickly that they aren't good at communicating with each other, at all. You must become an advocate, a coordinator, a messenger, a record keeper, and many more. At the Aerodigestive clinic, the doctors each evaluate, run tests, and come together to make a plan.
Over the next week, we will see so many doctors and medical professionals. Easton will have lots of tests and some sedated procedures. Monday alone, we will be meeting with more than 8 doctors. To name a few, we will be seeing Gastroenterology, Neurology, Hepatology, Genetics, Pulmonology, as well as Speech Pathologists, Occupational Therapists, and Physical Therapists.
How did we get here?
While this could be a long story, I'll keep it short. Easton simply wasn't getting the level of care that was needed from a few areas of specialty at our old team. He hasn't gained weight since November 2018. He can only tolerate elemental infant formula. He still has GI struggles and some other random symptoms that don't all line up with his primary CMV diagnosis. While he may be physically stable currently (as in, he is not inpatient to survive like before), he is not thriving.
This week has been awhile in the making. I first had a feeling we needed to search for a second opinion in December 2018, but I decided to wait until after our next round of appointments in February. After those appointments, I knew it was the right thing to do. I called Easton's pediatrician on the way home and asked if she could put in the referral for the second opinion. She immediately agreed. At the time, his specialist team was okay with no weight gain, barely looked at him, and were very dismissive of all of my concerns. It was time to look elsewhere.
It was a few weeks from when we asked for a second opinion to when I was able to meet with a Mayo Clinic Gastroenterologist. He was a wonderful doctor, and wanted Easton to get into the Aerodigestive clinic as soon as possible. He agreed with all of our concerns and definitely was not happy with where Easton is.
Because of the amount of specialists that they want Easton to see, it took months to get this week coordinated. But we are HERE!
Goals
We have lots of goals for this week, but mostly I want to make sure that we are getting the care Easton deserves. Making sure that he has the best chance to thrive. Making sure that we aren't leaving any stones unturned. We want to give Easton the best chance to grow and thrive and live his life comfortably!
This week will be busy and stressful and exhausting, hopefully not too terrible!
I can't wait to update you on how the week is going. Thank you for all of the love so far!
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