Tuesday, July 2, 2013

I lived my "What If..."

A few months ago, I shared a story with the CF Foundation about my vision for the future of chronic care management. If you missed it, you can read it here. Last week, I lived my "what if". Let me explain.

About two weeks ago, we packed up shop and headed east for our summer visit to the grandparents house just outside of Philadelphia. About a week into the trip, Drew developed a cough. He'd been doing pretty well and so this cough was new but not anything that I was terribly worried about. Two of his siblings had runny noses and coughs and I'd figured he had just caught the virus that they had. After a few days, the cough frequency was on the rise and his oxygen saturations were on the decline. I track many of his symptoms/behaviors with a tool called PersonalExperiments so I could see from his data that this was the case. I put in a call to his Pulmonologist back in Cincinnati suggesting we start an oral antibiotic and after some discussion she agreed that that might be the best next step.

Later that night, Drew went into some serious coughing fits like I had never heard before. He would cough and gag for hours on end, getting little to no relief from breathing treatments or airway clearance. He finally fell asleep around 2am, but woke up worn our and not much better. The next day he had another one of these intense coughing spells, and his doctor and I felt that he might benefit from an oral steroid as his symptoms seemed to indicate that there may be some serious inflammation causing the intense coughing fits. That evening, we started both the steroid and oral antibiotic and he went to bed. Then, at 11pm, 2am, 4:30am and 6:30am he was up again, coughing and gagging, still getting little relief from breathing treatments, so we decided that it was time to head to the ER.

We arrived at CHOP around 11:30am and were immediately taken back into a room. The doctors and nurses listened to my whole story and I shared with them the data I'd been collecting so they were quickly able to see what had been going on. I also gave them access to his EHR through MyChart, where they saw his bacteria sensitivities from his most recent culture and decided which antibiotics would be most effective in treating his exacerbation. We had checked in, gotten an x-ray, done a viral panel and an epiglottic culture and were admitted and moved up to a room in under 2 hours. If you've never had the opportunity to visit the ER, that quick of a conversion from arrival to admission or discharge is unheard of.

Once we were up in our room, we were greeted by a resident before we had even been screened by our nurse. She asked to see the data that I had been sharing in the ED (good news spreads quickly!). I shared my data with her and expressed my apprehensions about this being an exacerbation. An exacerbation is pretty much defined simply as a temporary worsening of the lung function due to an infection or inflammation. Although no formal definition exists, an exacerbation is generally characterized by the following symptoms:
1. Shortness of breath
2. Fatigue
3. Increased cough
4. More productive cough
5. Drop in FEV1 or other markers of the pulmonary function tests

The protocol at many hospitals is to admit and treat with IV antibiotics if a patient is exhibiting these symptoms, as the assumption is made that they are suffering a pulmonary exacerbation. I did not believe Drew was having an exacerbation. While I haven't been collection data for long enough to have caught an exacerbation, I recall him being symptomatic 24/7, and Drew's serious symptoms seemed somewhat isolated to sleeping or laying down. I had notes in my tracking that called out the times that these things were happening, and at 3pm he was running around the hospital room and playing without a care in the world - asymptomatic. I thought that Drew had caught the cold that his siblings had and while he was sleeping/laying, the post nasal drip was throwing him into these coughing fits. His symptoms just didn't fit the bill of his "typical" exacerbation.

Based on the data I shared from his EHR, the attending doctor came in to discuss the IV antibiotics that they wanted to put him on. If I was going to agree to IV's, they chose the two that I would have also picked based on the positive response he had to them in the past, but I wasn't ready for IVs. Once you start two weeks of IV antibiotics, it isn't common to stop them until they're complete. I once again pulled out my data and had a discussion with the doctor about waiting to see if the steroid and/or the oral antibiotic that he is on would kick in. Since we were already in the hospital, he agreed to monitor Drew overnight before starting IV's on two conditions: I would agree to start the IV's if his oxygen dropped any lower (he was at 92) or if he had any more coughing spells overnight. He had started the steroid the night before so had only had 1 dose of both that and the oral antibiotic, usually not quite enough time for Drew to respond. He was also on inhaled Colistin as we work to eradicate his Achromobacter. The benefit of Colistin is that is covers pseudomonas and the Cipro he was on covers a number of other bacteria that he has grown in the past. It just seemed to me unlikely that he was having a true exacerbation. 

So we hooked him up to a Pulse Oximeter and put him to bed. Moments later, a doctor stopped in to tell me that his culture came back positive for Rhinovirus, otherwise known as the common cold. It is known to cause a lot of inflammation and it's not unheard of for kids to have lots of coughing with this virus. Kids who have tracheomalacia, Drew, often do end up in the hospital because their airways are under attack more than they can handle on their own, and many times need a steroid to help reduce the inflammation and help them to get over the hump. For the first night in 3 nights, he slept all night long without coughing. His oxygen levels gradually started to go up on their own overnight. He woke up in the morning refreshed and looking/acting well again. I needed to take him to CHOP that morning because I was starting to reach the point of uncomfortable managing it from home in the case that things would get worse before they got better. But had I given it one more night, one more chance for the steroid to kick in and do it's job, we probably could have avoided the hospital altogether. 

We were discharged at 10:30am the next morning, just under 24hrs after we had checked into the ER. Because I had been tracking his health so closely, because they were able to access his previous test results, because I felt empowered enough to speak up and express my perspective and desired course of action, and because I had given them the evidence to trust me, we found a mutually agreed upon solution that saved us two weeks in the hospital. It saved Drew the stress of being in the hospital for 2 weeks. It saved me the trouble of trying to arrange my life for a 2 week hospital stay. It saved the doctors and the hospital time and money. My insurance company wasn't being billed for unnecessary tests and an extended hospital stay. 

I have data on Drew. I know the signs and symptoms of a pulmonary exacerbation. I know the difference in his cough frequency or appetite that is associated with the onset of symptoms. I know what has worked for him and what hasn't. Having that data and sharing it with anyone and everyone who might be able to better help him or benefit from it personally is why I track it. I lived my "what if" and I couldn't be more pleased with the way it turned out. 


  1. Erin, this is fabulous! I know our situations are different, but because of our close monitoring of our daughter's care - we haven't been overnight in a hospital in a long time. We spent 100 days in the hospital during her first year of life, but since then we've only been in the ICU overnight after surgery. I'm so thrilled for you that Drew was in and out and all urgent issues resolved in <24hrs. Great work Super-Mom!

  2. What a post!
    Erin thanks for the courage to share stories like these. I cannot imagine living them in the moment, let alone the reflection it takes to write about them so well. I'm glad Drew is on the mend and that he was spared the two weeks of IV treatment!

    I'm also a bit torn. On one hand, we are living in the future. You could pull up his medical records from miles away from home and that's somewhat magical if you think about everything it takes to make it possible. On the other hand, what if your doctors at home didn't use MyChart (or some other vendor's equivalent)? What if you hadn't enrolled for access? When we went live while I was working at a large integrated health system, our adoption rates surprised us. More people than we expected signed up. But it was no where close to 100%. So I go back to thinking, what if there was more seamless interoperability?

    I guess what I'm driving at is that there are so many little lynch pins in this process and if one of them wasn't present the outcome for you and Drew might have been different. I'm sure its not an easy answer - a national health information exchange - but wow does your story every prove how important the interchange of health data is.

    Thanks agin for sharing this post!

  3. I can't stop telling all of the C3N project staff this amazing story, Erin. It's been a huge source of inspiration and motivation for all of us!

  4. Love the post. Thank you so much for the link to Personal Experiments. I can now do it online versus by hand. So glad Drew is doing well!