When I grow up

I have been so out of time for the blog lately, and I hate that because I love sharing whats going on with us. Admittedly, my lack of time is self imposed as I sign up to help out or attend everything that is offered to me.

We had a really nice Thanksgiving last week. Some of Martin's family was able to join us for dinner on Thanksgiving and hang around for a few days, allowing me plenty of time for my Black Friday shopping and several photo sessions that I had scheduled. The photo biz has really picked up recently. I am on the fence if I want it to really turn into anything more than a [really] small business that I can occasionally make a buck from. I have been thinking a lot lately about what I want to do with my life after the kids are all in school. I have gotten so involved at CCHMC with CF and some other parent opportunities that have come down the pike. I really, really love being there and spending time with the people that work there and learning about all that they do and have planned to do to improve. I remember when I was first invited to participate in the ParentTOUCH program and the director of family services (I believe) came in to talk to us about the program. He said that their mission was to eliminate dissatisfaction. I was immediately humbled by this. Working at Children's is so much more than just a job or a paycheck for the people who work there. They are such special people who are truly making a difference in the lives of so many people whose paths they cross every day, and I started thinking about how I wanted to be a part of that.

As working began within the PIQI group, I got the chance to speak with several members of the CF team and other groups within the hospital and learn what they do and how I can help them. I became involved with the C3N project and now I am a part of a team that is working to bring this to the CF community. As a branch off of that, I've had the opportunity to learn about an amazing company called Ginger.io, that turns personal behavioral data into insights about your health and provides the opportunity for earlier interventions. (check out their website for the scoop on how that all actually happens).

I had a meeting yesterday with the Cystic Fibrosis Foundation about all that they have going on right now and what capacity I have to help them. We talked for almost 2 hours about what events I like and what I don't so much and how I can help them. They want to make sure that they're not burning me out with their requests for help. I already do their advocacy work, pretty much alone since I can't seem to get another darn person on my side. I love to help them out with whatever I can because ultimately (and admittedly somewhat selfishly) its helping us out in the long run. So I told them what I love and what I don't love so much and we talked about how they can use me for the upcoming year. One of the big things was bridging the gap between the foundation and the clinic, something I need to talk with the folks at the clinic a little bit more about next time I'm in.

In all of this stuff that I've been working on, I have been able to take a step back and see an underlying theme - the need for and importance of collaboration. Collaboration between patients and parents and physicians and researchers and data scientists produces that shared goal of improving outcomes for our kids. I want to be a part of this. This is what I want to do.

So the other day, I was doing Drew's breathing treatments, flipping through my Twitter account, and came across a job listing for Ginger.io. Here's what it said:

Are you happiest at the heart of a group? Do you get energy from interacting with people? Do you enjoy being the “voice” of an organization? If so, then you might be a great fit for Ginger.io. We are currently looking for a full time Patient Experience Manager to help us interact with and support our patient users. We want someone who is outgoing, empathetic, and able to easily connect with people. A passion for detail and organization is key, as you’ll be managing many different relationships across our community. And as the “face” of Ginger.io with our patients, you’ll be an essential voice inside our company as well, helping us think through how to best meet their needs.

Um, HELLO!! If I could have written down on paper what I want to do with my life based on the things I've been working lately, no better words could have been chosen than the ones written here. This is my job!! I want to do this!! But wait. I still want my family to be #1. ARGH!! This is why I thought that perhaps the photography gig would be a good choice for me - make my own schedule, work when I want to, control my own income. But I would have to grow my business if I wanted to really make money doing it. And frankly, I'm pretty happy with it the size that it is because it is both easy to manage on my own and allows me the flexibility that I'm looking for in raising my family.

I decided that I couldn't let this opportunity pass, so I emailed Ginger.io telling them all about myself. I have business experience (pretty decent business experience I might add). I have healthcare experience. I have built relationships with important people to promote my cause. I am a voice within the CF community (a pretty loud voice, some might say), and if we want to work to bring the C3N and Ginger.io to CF, I need to be a part of this. I know that the time that I am willing to put into this isn't exactly what was listed out in the job description, but the time that I can put into it if they are willing to be flexible and creative in my job description, will be productive. If I haven't already scared them off with my strongly verbalized desire to be a part of their team, hopefully I'll be hearing from them soon on how we can make something work.

So there you go. I have made the decision that I want the work that I'm doing to be more than just me offering an idea or suggestion at a meeting I can weasel my way into. I want my voice to be heard and my vote to count. I want to be a part of the decision making and help to improve the outcomes for kids like Drew. Not full time just yet. Jake isn't even 1 yet and I want to take him to story time and music class just like I did with Ella and the twins. But he's going to grow up and I'm going to need to be a financial contributor to this family [especially if we're sending this village to Catholic school]. I really liked the job that I had before I decided to stay home and raise our family. But the purpose that my dealings with Children's has given me has completely changed the way I look at the world. I have a lot to give and I want it to be purposeful.

Our clinic visit went....

GREAT! Everything looks good. Drew is growing great, sounds clear, looks good. Our culture results came back clean so all around things were really good!

A couple of weeks ago, just after the NACFC, I had emailed Drew's doctor a bunch of questions. They were just things that I'd heard at the conference that I was curious about or whatever. We talked about some of it a little bit while we were in the office, and what I learned was that there weren't really cut and dry answers to most of it. Here's what I wanted to know:

I went to the Infection Control session at the NACFC. There was an interesting presentation on patient to patient spread of bacteria as identified by genotyping. They were suggesting that droplets can remain in the air for anywhere from 45min - 2hrs after a patient has left the room. In the past, when Drew has cultured pseudomonas, I go a little nuts -  trying to clean things differently and throwing out bath toys that may be grosser than they should, clorox wiping every surface before anything touches it  - then after 24hrs I realize that i'm being nuts and go back to being reasonable. I will admit that I have often wondered if he could be picking something up in clinic. As much as I realize the value of having him there every 3 months as well as when he is sick, I can't help but get nervous as he plays on the floor and touches everything he can reach. But he's two and I have to balance letting him be a kid with my nerves and need to keep him healthy. Anyway, my point/questions is whether you guys every genotype the different bacteria that patients culture to determine if the same strain is being passed between patients who may have shared a room? I'm sure that the rooms are cleaned between patients, but does that include everything from the floors to the light switches and everything in between? Is there ever any measure taken to clean the air between patients? The presenter suggested that there was a significantly increased risk of acquiring a pathogen if you are in the same room after a patient who is colonized with something like pseudomonas or burkholderia cepacia. Just wanted to see what you thought about that. 
The next question is about neb care and breathing treatments. I've asked this to Ginger before but I still don't totally understand it so maybe someone else might. It is suggested that after sterilizing your nebs, you rinse them with sterile water. Aren't they already sterile? Also, I think that we use more neb cups in a day than average and here is why. Once we use a neb, it is damp. We set it aside until its time for our next treatment. For us, the place we keep it is with the nebulizer machine which is on the bottom shelf of a table where we keep all of Drew's meds and equiptment. So now the damp neb is in a dark place. He was just breathing into it - if he has got some bacteria in his airways and is coughing into the mask/cup, couldn't this neb just be growing bacteria only to be inhaled again during our next treatment? I feel like I'm paranoid that he's going to re-colonize himself with whatever bacteria he has so I end up using new nebs almost every time. I swear I'm not totally neurotic, just trying to figure out the best way to do things to keep Drew as healthy as possible.Also on the neb front, I notice when Drew was in-patient in CHOP this summer that the Drew was coughing a ton during his vest and breathing treatments, even more so than when he was at home and sick before we were admitted. I felt like it was the most productive airway clearance we had every done. I asked a bunch of questions (i know, hard to believe) and realized that they are administering the medications at 50psi and the machines at home only run at 30psi. So at the conference I found Pari and asked them and they didn't really have a good answer for me. So I asked Genentech and Novartis and both told me that the indications were for medications to be administered at 30psi - that's what all their medications were tested at and to ensure proper dosage and absorption into the airways. No one knows why the hospitals run at 50psi but Pari, Novartis and Genentech all seemed shocked to learn that the medications were being given differently than indicated by the pharmaceutical companies. Do you know why this is or have thoughts about this discrepancy? 
I saw a presentation on Gallium in eradicating psuedomonas. (Symposium 13). My two questions are 1) Do you think that this could be an option for Drew since he shows an intolerance to inhaled antibiotics and 2) Can bacteria become resistant to it? It was really interesting to listen to the presentation. Its already approved by the FDA. It looks like its been mostly used in adults, but it just sparked my interest as Drew seems to continue to grow pseudomonas. 
My last question is about the use of intranasal DNase to help keep sinus disease under control (Workshop 28). Is this something that you're at all familiar with? I can't tell if this was just a study or if its being used in some patients. Whenever we see Dr. E, he tells us that he doesn't usually see CF patients with as advanced sinus disease as Drew has until they are about 7 or 8 and that Drew is the youngest patient he has ever done surgery on. I thought that if the intranasal DNase therapy was available, it might be beneficial for us to at least try it.

I think they were all pretty good questions. The Gallium presentation was specifically of interest as we seem to be intolerant to inhaled antibiotics, at least for now. The presentation led you to believe that pseudomonas is never really truly eradicated, just hidden way far down in the lower airways and not always causing a problem. If something like Gallium can really eradicate it, I'm definitely down for giving it a try. We currently aren't culturing it, but if we do again I will probably resurface this question.

One other thing I wanted to share tonight about the CFF that is pretty incredible. They have now partnered with Pfizer on a Drug Discovery program for the Delta F 508 mutation (one of Drews!) over the next 6 years. I think people underestimate how close we are to a cure for this disease. Its funding that's keeping us from curing this - that is it. The more money, the more research and the cure will be found. Talking with the top scientists and researchers, the cure is there...we are so.stinkin.close. This is just an amazing opportunity for the CF Community. Read the article by clicking here.

Happy Thanksgiving, y'all. Hoping I have some time over this break to get some thoughts down and get some good posting done here!

Watching this will be so worth your time!

This video will make you smile. This is why I love Cincinnati Children's Hospital so much. The people that work there are so incredible with their spirits always high and outlook always optimistic. Working at Children's is not just their job, but rather their calling. This video will make you smile.

Upcoming clinic visit

Its starting to get cold here in Cincinnati. That means two things - first, that I better get my act together for a long winter inside with 4 kids. And second,  that the germy season is among us. Drew has been on antibiotics for the past 10 days for a junky cough. It seems to get better, but there are mornings that it still sounds gross. I'm worried that when we go to clinic on Wednesday that he will grow pseudomonas again. Of course we won't know what he grows until probably Monday at the earliest. We've been doing airway clearance 4 times a day, which has kept us pretty much homebound. Its definitely nice having the Pari Trek now which I keep in the car and can do breathing treatments when we are taking Ella to and from school.

During this time of antibiotics and increased treatments and stuff, I got thinking about the adherence problem that many CFers struggle with. I saw many presentations at the NACFC about why doctors think people don't take all their medications regularly. While we haven't skipped an airway clearance or a breathing treatment or a single dose of an antibiotic to date (okay, maybe once), I think that a big part of the problem for many people is simply forgetting. In the morning, we have to give Drew 1ml of Vitamax and one Prevacid pill. We have to give him enzymes with his milk, and then more with his breakfast. We do Atrovent, Hypertonic and Pulmicort after that. That's on Mondays. On Tuesdays, Thursdays and Saturdays, we add a Vitamin D to the morning mix. If Drew is on Omnicef, we have to skip the morning Prevacid because you can't give an antacid within a certain amount of time of giving the antibiotic. So now we have to remember to give the antibiotic and also to give the Prevacid after lunch. After nap we do another Atrovent and Hypertonic, and in the wintertime when Drew is often sick, we do his airway clearance then too. Between gymnastics on Tuesdays and the occasional story time or lunch out with friends, we need to remember to pack our enzymes because those get dosed regularly throughout the day (roughly 25/day). After dinner we do Atrovent, Pulmozyme and Pulmicort and then can't forget evening Vitamax and Prevacid when he's healthy, or Vitamax and antibiotic when he's sick. And when I'm talking antibiotic, I mean an oral one that we give him from here. When he's on IV's, the whole story changes as the two IV's need to be given every 8 and every 12 hours (one 3x a day and one 2x a day) very precisely to avoid damage to his kidneys. On top of all of this, we try to make sure that he's getting a billion calories in a day and plenty to drink to avoid dehydration, which can happen very easily to people living with CF. All the while, we try to live our lives as normal as possible and not let CF run them. Its a very time consuming disease, and the prescriptions for more to do just continue to pour in.

Honestly I think that people simply forget to take medications sometimes. We are diligent about it, but I know that not everyone is. Perhaps they don't fully understand the importance of such diligence, or perhaps their schedules are busy and the burden of the disease and all that it requires just makes them forget sometimes. I don't know why it is really, but I would love to work on a project with our clinic to try to improve adherence or at least better understand the problems with it and figure out ways to make it work for everyone. Here's a link to the big presentation on adherance from the NACFC for anyone interested in checking it out - https://www.nacfconference.org/art/plenaryarchives/2012%20Riekert.pdf.

The Good Doctor

The Good Doctor

Jesse Dylan, November 5, 2012

Dr. Brian Goldman is right.

We expect a level of perfection from our doctors, nurses, surgeons and care providers that we do not demand of our heroes, our friends, our families or ourselves. We demand this level of perfection because the stakes in medicine are the highest of any field -- outcomes of medical decisions hold our very lives in the balance.

It is precisely this inconsistent recognition of the human condition that has created our broken health care system. The all-consuming fear of losing loved ones makes us believe that the fragile human condition does not apply to those with the knowledge to save us. A deep understanding of that same fragility forces us to trust our doctors -- to believe that they can fix us when all else in the world has failed us.

I am always surprised when people say someone is a good doctor. To me, that phrase just means that they visited a doctor and were made well. It is uncomfortable and unsettling -- even terrifying -- to admit that our doctors are merely human -- that they, like us, are fallible and prone to bias.

They too must learn empirically, learning through experience and moving forward to become better at what they do. A well-trained, experienced physician can, by instinct, identify problems that younger ones can't catch -- even with the newest methods and latest technologies. And it is this combination of instinct and expertise that holds the key to providing better care.

We must acknowledge that our health care system is composed of people -- it doesn't just take care of people. Those people -- our cardiologists, nurse practitioners, X-ray technicians, and surgeons -- work better when they work together.

Working together doesn't just mean being polite in the halls and handing over scalpels. It means supporting one another, communicating honestly about difficulties, sharing breakthroughs to adopt better practices, and truly dedicating ourselves to a culture of medicine that follows the same advice it dispenses.

Yes, this is certainly easier said than done. But as daunting as the task may seem, we aren't heading into the dark alone. It's been done before. We aren't the first people to face this challenge.

The airline industry understands how to learn from its mistakes; it has a firm grasp of best practices for accident avoidance. Pilots, aeronautical engineers and flight attendants develop those practices from examining data about past plane crashes.

Regardless of scale, total damage or mortality, federal investigations reveal the exact series of events that precipitate each crash and provide a methodical account of what went wrong. Crashes are not shameful moments swept under an emotional rug; they're teachable moments that are examined, diagnosed and learned from.

I understand that airplanes and arteries are vastly different systems. I'm not trying to equate a plane crash with a botched diagnosis -- what's important here is the approach to error. The airline industry has understood, internalized and implemented a system that recognizes human and mechanical failures as important lessons and opportunities for improvement.

The Collaborative Chronic Care Network (C3N) is a project that catalyzes improved patient care. Chronic illness management is driven by the same lessons that Dr. Goldman and the airline industry have brought to light. Dr. Richard Colletti, a C3N collaborator, explains that "the care that a patient gets is not just dependent on how good the doctor is or how much the doctor cares. The care is dependent on the system that the doctor works in."

Dr. Colletti sees medicine as an ongoing learning process, where patients and care providers actively help each other find solutions on the journey to wellness. This openness makes collecting empirical medical knowledge less of a Herculean effort -- it encourages and even facilitates data and care collaboration among networks of doctors.

C3N implements this approach with real action and systemic change.

They note, "By combining large data registries and making them accessible and interactive, it drives action and innovation to create a more reliable and accountable care delivery system for children and their families dealing with chronic gastrointestinal diseases. And with an open-source framework, the project is developing a means to overcome barriers that involve concerns about intellectual property, data sharing and privacy, and medicolegal liability."

Perhaps, then, a new generation of doctors can eliminate the culture of walled gardens. More and more, we hear experts discuss the same kinds of shame addressed by Dr. Goldman -- the healthy shame that can be dealt with, and the unhealthy shame that shakes you to your core and drives change. Transparency in the doctor's office and a culture that accepts and learns from its mistakes should be a priority for medicine.This system is not just a great idea or an interesting experiment; it is a thriving solution that's changing the lives of patients everywhere. Dr. Colletti has reported that, because of the C3N methodology and practices, 10 percent more children with Crohn's disease are now in remission.

*I'm working with Cincinnati Children's Hospital to bring the C3N to Cystic Fibrosis and improve our outcomes too!

What you can't get out of, get into wholeheartedly

Every single night around 9:30 I swear that I am going to bed early. Then 10,000 little things come up and before I know it it's midnight. Tonight is no different. Tonight is Halloween, otherwise know as my birthday's eve. I took the kids trick-or-treating. I ate my weight in Milk Duds. I edited some pictures that I had taken last weekend. And now at 10:30, I sit at the computer answering emails that I had meant to respond to earlier or ordering a gift for someone I've been thinking about or jotting down some thoughts on this blog. 

Yesterday was a great day. I had the opportunity to speak at our Finest Young Professionals Kick Off event. In the past we have been a sponsor family, assigned to a few candidates to offer a personal connection to the diseased and support through their fundraising journey. Sometimes the candidates would come over to meet Drew and be in contact with questions or needing encouragement. Other candidates we would never even hear from or see one time. This year, in an attempt to up the ante if you will, they are having the candidates set up an initial meeting with a CF sponsor family so that they can hit the ground running. At the meeting yesterday, J.P. Clancy spoke about the clinical side of the disease with Gary McPhail (two of our docs here in Cincy). I shared what day to day life is like and took the candidates on a tour of the hospital and answered their questions about the disease. You can see in their faces and through their words that they had never been to a children's hospital before. Before Drew was born, I hadn't really either. It's almost second nature to me now, being at the hospital, with how much time I spend there, both out of necessity and out of desire. But it's hard to see sick kids. It is impactful when you are trying to drive home how important the fundraising that we are doing is. I think that they got it. I hope that they got it. 

After that, I had lunch with Dr.Clancy and another doctor who is spearheading the C3N project that I am working on bringing to the CF world. If you are new here and haven't heard about C3N, you can visit www.c3nproject.org and under the Patient Intelligence hyperlink watch a brief video outlining what it is. Keep in mind that this network was created for the IBD community, but we are working to bring it to CF and other chronic diseases. It was a great meeting. We are working toward laying out the framework for CF community. I really enjoy being a part of this project and pretty much any project with Childrens hospital. It just seems so purposeful and like the right thing to be doing. I can't explain it great, but I do love it. My day at Children's wrapped up with my volunteer time in the NICU. There weren't a ton of parents there last night, but I spent a lot of time talking with the ones that were there. One family has been in there since June and though their attitudes are positive and their spirits high, you can see that it is just wearing on them. I hope that they will get to go home soon. Another family has a brand new baby and just started on their CF journey. I wanted so strongly to share the message of hope with them and I hope that they were able to get that from me. It's hard at the beginning, and there are still times when I get down about CF. But life for me got a whole lot better when I accepted it and decided to fight for it instead of against it. I saw a quote the other day that couldn't be more true for what I have done. It was this: "What you cant get out of, get into wholeheartedly." I'm on a mission baby and I like to get my way. 

I should take this opportunity to go to bed. It's late now. I got my thoughts out. Hoping that tomorrow is a good day.

- Posted using BlogPress from my iPad