My ideal

We had an appointment this morning and it went great! We woke up early and did all of our breathing treatments, and right before they ended, we signed onto our web portal so that our respiratory therapist could watch how we do them and review settings on the vest. We both took some notes. We discussed using a new device called an Aerobika, something that he can breath into that will give positive pressure and vibration so loosen secretions which he can then expel. She shares a link for us to check out another kid using it on YouTube and tells us she will send one out with home care later this afternoon.

Between the RT and the doctor, our nurse gets online to review our current meds with us. She's sent me a message through our shared portal last week and asked me to review, marking the medications that we are or are not taking, and I'm able to do it one evening after I get the kids to bed. She simply confirms that nothing has changed before we move on. She asks what we need from them - refills, doctors notes, referrals - and agrees to email us the forms I had sent for school next year, and then steps away to grab the doctor.

The doctor pops on to review labs that we had done at the outpatient clinic one evening last week and is pleased that everything looks great. We've been practicing our PFTs with our home spirometer and, while our number is down slightly, we agree that since everything else is going so well that we should just stop by the clinic sometime this coming week to repeat it in the PFT lab to make sure there isn't something going on that needs treating. His weight looks great, something she's been following through our shared tracking portal, and neither of us feels the need to meet with the dietician this visit. We had discussed this prior to our visit in our pre-visit plan, but she confirmed that he was in good standing all around and agreed it wasn't necessary to spend time meeting with anyone else. As she is talking, we both have the opportunity to create a shared note - her turning my narrative into data and me reacting her thoughts and turning her suggestions into action items in my own words. She notices that my interpretation of what she had said earlier wasn't what she had meant, and we quickly discuss before we both feel confident in our next step. She asks about our summer plans and what refills we might need, and then puts us on a brief hold while transferring us to the Infectious Disease doctor whose following us because of Drew's achromobacter.

After just a few minutes on hold, the ID doc gets on the line with his nurse and we talk about next steps for treating his achromobacter and candida, a fungus that grew on his last culture. We have culture swabs at home that we use every few months and mail them into the lab so that we have results to discuss during our visit. This is so much better than the old way when there would be an anxiety filled week waiting for a lab result to pop up in MyChart, not knowing what it would say or how it would or wouldn't change our life. We know what he's got going on down there, and talk about plans for treatment. He mentions a study currently underway for CF kids looking at the variety of bacteria families found within one persons airway to determine if folks are acquiring one strain of a bacteria or multiple, and has found that in the 80ish folks they've tested, not only do they only have one strain, but they're all unique, suggesting that the infection control protocols they've put in place have all but eliminated the passing of bacteria from person to person in clinic. This is good news for a germophobe to hear! He offers to take a look at the specific strains of achromobacter that Drew has to determine how they act and react to different medications, and naturally I take him up on the offer. The notes I'm taking that he can see are reminders for myself to discuss with my husband when we he gets home this evening.

Before we get off the call, the nurse who had joined the ID doc offers to help us arrange our next appointment, suggesting that it may be difficult to find a time that works with everyone schedules. She shares her screen while I look through my calendar and we are able to find something that works.

Before we hang up, we are scheduled for our next follow up, this one will be in person as we alternate between e-visits and visits to the hospital to minimize the interruption that CF has in our lives and also the risk to catching something while we are there. We can both download a copy of note we have co-created. The appointment is over within 45 minutes, taking approximately 2-3 hours off the time of a normal visit. Drew is excited to have seen the faces of the folks who normally take care of them, as over video conference they don't need to gown, glove and mask. Its funny how a little face time, even virtually, can create that kind of connection.

None of this really happened. But what if? What if I didn't have to find a babysitter for the other kids during Drew's appointments, paying them for 4 hours while I sit in clinic with Drew who would rather be at home. What if I didn't have to bribe him with treats for not touching the elevator buttons in the hospital. What if I could get labs done in the evening rather than between 9-4, and what if I could talk with my doctor about the result the same day that the results come in, eliminating much of the worry and fear that comes simply with waiting. What if I had the chance to modify his med list, telling them what we take, and ensuring its correctness in his medical record, in real time. What if I could really create a note with his doctor, google docs style - me typing in blue and her in red, the respiratory therapist in orange and the dietician in green and the infectious disease doc in purple, true and total transparency - and what if that enhanced understanding between us, me more clearly understanding her recommendations, and her having a glimpse into my thoughts and feelings, practical and emotional, eliminating errors and misunderstandings, creating an action plan that we both feel confident that we can follow. What if I could look at a calendar online at a time that's convenient for me, selecting who I want to see and when, simultaneously checking my calendar to find a time that works for us and never having to wait on hold while a scheduler tries to solve this for me between the hours of 9-4pm.

What really happened during our appointment last week was captured in the previous post, but if I had it my way, this would be my ideal.