"Those who move forward with a happy spirit will find that things always work out."

Drew has been having a lot of trouble staying healthy during his off cycles of inhaled antibiotics and it is concerning. He should be able to go much much longer than 2 weeks without needing an antibiotic to suppress a bacteria to keep it from causing problems. The good news is that the antibiotics continue to work, bringing him back to normal. However, we need to find a way to keep him healthier for longer periods to avoid the inevitable lung damage, so we are going to try another round of IVs. We are actually going to triple hit the bacteria, with an IV, and oral and an inhaled antibiotic to see if we can regain control and keep the poor kid feeling good. I wish he was old enough to do PFTs so that we could measure his lung function and determine what kind of toll this is really taking on him. I also wish I had a logistics manager living in my house.

Drew will be going into the hospital on new years eve for a bronchoscopy and PICC line and then will come home to do the IVs from here for two weeks. I joked with his doctor that when they offer him something to make him a little fuzzy before they knock him out for surgery that they should also offer that to parents to take the edge off. And it's not just the edge of sitting in the "Same Day Surgery" waiting room while you're baby is put to sleep and poked and prodded inside of an OR without you there to see him, but also for the waiting of test results post bronchoscopy. It takes about a week for bacteria to grow when they take a culture, and so we will treat while we wait but we will still wait and worry and wonder what we will find and what we will be able to do about it. A part of me still hopes that it's just this antibiotic resistant bacteria, achromobacter, because we know what it is even though it's not responding to anything. It sounds sick to hope for that, but things could be worse. A little part of me hopes that it's a different bacteria that isn't horrible, but that we've just been treating with an antibiotic that doesn't cover it, and therefore if we can treat it with something that it's sensitive to it could help to make things better. I think that scenario is probably the most unlikely. We could also find other horrible bacteria or fungus, stuff that doesn't respond to antibiotics or anything and causes rapid lung function decline. This, too, is perhaps unlikely though certainly a possibility. There is just no way to tell but to wait.

It almost seems as if there is no good scenario here. We are going to get test results that will tell us what bacteria he has growing in his lungs and hopefully what antibiotics, if any, it can be treated with. I might have an ulcer waiting for these test results. Drew looks and sounds and acts great 95% of the time, so it's really hard for people to understand the complexity of this disease and how sick he really is. Even if the bacteria that he is growing is antibiotic resistant, we will continue to treat him with a number of different antibiotics from all different classes to try to find something that will get and keep things under control. 

And then I look at him and I think no good scenario? He was swimming this morning, and well! Dance lessons are his favorite hour of the week. He goes to school 3 days a week, and runs and paints and plays with other little boys and girls who is no different than. He watches an inordinate amount of Toy Story. He tells jokes and wrestles with his brother. He loves the Children's Museum and going to the zoo. His a wizard on the iPad. He is so gentle and loving and kind, a true mamas boy. He cares so much for other people, offering a hug to a crying sibling or helping us to clean up a mess around the house. He holds my hand through every. single. treatment., just taking it all in stride. I'm living a good scenario and I don't take that for granted. 

I really can't believe how wonderful this year has been. It may seem like a strange transition from my downer health update, but it has truly been an amazing year. The opportunities that have come my way are beyond words. The connections that I have made and the work that I am doing and the people that are all on my team fighting for a better way, a faster way, surely don't realize how much I value their camaraderie on my mission. It's every time I speak up, every tweet that I send, every time someone offers me a glimmer of hope that we can do this, we are so close, I can't even express my gratitude. Emails from people around the world let me know that while others don't have the courage or even just capacity to do all that I do, they appreciate it. I forge ahead at 110mph hoping and praying that we get this disease figured out in time and that the people who I annoy along the way realize that I do it all with the very best intentions. I am trying to save a life, and live a life and raise 4 little lives and be a friend and have some fun and change the world all at the same time. I have so much hope but I am terrified, so please stick with me. 

I couldn't be more grateful for all of the ears that have listened to me over the past few years, but this year in particular. The CF Foundation is on my team now, creating a Collaborative Chronic Care Network for CF. They realize the value of all working together for better outcomes and a faster cure. My heart belongs to Cincinnati Children's Hospital for embracing me as a "family partner" on their team, interjecting my thoughts into their well planned everything, sending me to conferences to learn more and share back what I learn, listening to me express both hope and fear, and encouraging me to keep going. 

I read a quote today from John Wayne that struck a chord: "Courage is being scared to death and saddling up anyway." There are so many more opportunities awaiting in 2014, so I will roll up my sleeves, drink my Starbucks, and continue to do the best that I can, or saddle up, if you will.  But I can't do it alone. If you're reading this, I need your help. I need friends and family to fund raise and advocate with me. I need fellow CF mamas to test out these systems and tools with me, and bring new ideas to the table. I need patients to push the limits of their doctor-patient relationships to show the world how much better things go when we work together. 

So thank you, to everyone in my world, for an absolutely beyond words amazing year. Cheers to another great one in 2014. Courage

My Energy Reserve

Drew is getting sick again. Well, not really again as much as he's not ever really getting better. It's a little hard to explain, but I'll give it a try. Last March, Drew started to culture an antibiotic resistant bacteria in his lungs called Achromobacter. While a bacteria in a petri dish may or may not respond to different antibiotics, the reaction of the bacteria to the antibiotics inside the body isn't always the same. The achromobacter that Drew cultured appeared to be resistant to most antibiotics in a petri dish but we tried anyway and Drew had a positive response to a few of them. His symptoms would disappear for a period of time but would always return and we continued to culture achromobacter. After months of trying to suppress symptoms and eradicate this beast, we had to move on. There are literally no other options suitable for Drew to try to get rid of this bacteria, and trust me I have searched the globe. A common practice in CF, to manage symptoms and keep bacteria suppressed to a point where it's not symptom causing, is cycling inhaled antibiotics on and off for different periods of time. It's a reasonable way to manage these different and persistent bacteria and prevent them from casing lung damage by keeping the bacteria suppressed to a sort of non-damage causing degree. Anyway, we've been cycling Drew on an inhaled antibiotic called Ceftazadime since this summer, 15 days on and then 15 days off. The problem is that he hardly makes from the end of an "on" period to the beginning of the next without. About a week after he finishes his 15 day on cycle, he starts coughing quite a bit, his oxygen saturations start to decline, his energy level bottoms out and we end up starting the antibiotics again to help bring him back down. As time has gone on, these episodes that occur during the off cycles seem to be getting worse, and today we decided that he needs a bronch, a tune up with IV antibiotics, and then a CT scan to determine if all of these exacerbations are causing lung damage. Lung damage is inevitable, but it hasn't happened yet and I am not ready to see it. Many people with CF start to develop lung damage or bronchiectasis early, so it wouldn't be abnormal if we saw it on a CT scan, but it still sucks.
Right now we are in a bit of a waiting period. His doctor is going to get a bronchoscopy scheduled, and since they have to sedate him for the procedure, they will place a PICC line at that time to start the IV antibiotics. Drew started the inhaled antibiotics last night, so he's had several doses now as we do them 3x a day, but his oxygen levels haven't yet gone back up to where they should be. If they don't start to get back toward normal tomorrow then they will admit him to the hospital where the bronchoscopy procedure and PICC line can be expedited. It would mean spending a few days in the hospital, but after the procedure we could probably go home and finish the IVs at home. He will probably respond to the inhaled antibiotics at home like he usually does, but the IVs will hopefully work a little better and give him more and longer periods of time without this bacteria causing a problem.
I know this all sounds crazy and complicated, and it sort of is, but it's also par for the course. Tune ups are commonplace, done in an effort to return patients to their baseline, but it doesn't make it any less stressful or scary. I hate to see Drew not feeling well. It's mentally, emotionally, and physically exhausting trying to figure out what's going on, what's causing it, what our options are for fixing it. The rest of my crew is out of sorts as we spend hours doing treatments and on the phone with doctors and schedulers and concerned family and friends, missing lessons and appointments but needing to prioritize. I will not lie, it is not easy. We are stressed and tired and guilty about who we should be spending time with and what we could have done differently to prevent the need for this even though we know we are doing the best that we can.
At times like these, I wish that I would have appreciated those down times a little more, the opportunity to bank a little bit of energy. I wish I would have gone to bed earlier, said no to a meeting or a dinner, and just taken a deep breath and relaxed. I don't know that it would make a difference, but during times like these I need to dip into my energy reserve, and it is dangerously low. Patience is shot, tempers are short and I am tired.
We should have more information by the end of the day tomorrow. I'm hopeful that his oxygen will start to go back up and that his doctor can get him scheduled for what he needs to have done sometime in the next week or so. I will try to keep the blog updated with how he's doing, though i've been noticeably absent from the blog for the past few weeks. I have so much fantastic stuff going on, stuff that will change the face of this stupid disease, and I will blog about it soon!

Finding a cure

"Walk with the dreamers, the believers, the courageous, the cheerful, the planners, the doers, the successful people with their heads in the clouds and their feet on the ground. Let their spirit ignite a fire within you to leave this world better than when you found it"
The other day I found my self daydreaming about what this life would be like if CF weren't a part of it. I was imagining playing after dinner instead of setting up for treatments, or waking up and taking a day trip without time constraints. I imagined making the kids all the same thing for lunch, not spending time pouring vegetable oil onto fruit and trying to mentally calculate how many grams of fat he would be consuming to appropriately distribute enzymes. I imagine what I would do with the time that would become available, previously spent refilling prescriptions, fighting with insurance companies over why we need a certain medication. I imagine counting weeks and months as weeks and months instead of 15 and 30 day on-again off-again antibiotic cycles. Maybe the constant fear and worry and anxiety that I have and try my hardest to suppress would melt away, or maybe I'm confusing the emotions of parenting with the emotions of parenting a child with a chronic medical condition. I really don't think the days that we're experiencing are all that bad, but I was dreaming of better. 
I keep myself pretty busy these days and a lot of it centers around Cystic Fibrosis. The C3N work that I'm doing is amazing. I am involved with different groups and committees at the hospital and at the CF Foundation, related to everything from adherence to advocacy. I am a caregiver, so I order meds, administer meds, clean medical devices, manage insurance issues, track symptoms, and the list goes on. However, the list of things that I do that aren't related to CF is longer. CF isn't our life, it's just a part of it.
We are exactly one year out from the first time I approached the CF Foundation about embracing the value of collaborative care - care involving patients and clinicians and researchers all working together to test and improve tools and systems to better manage health and care. Next week, we are going to Bethesda, MD to the headquarters of the CF Foundation to discuss the scope of work that we are about to partner on and I could not be more excited. How did all of this happen? What did I do to get here? Could my dream of collaboration for a cure really be coming true? 
I'm often asked what I did to get here, or what I even still do. I talk about it. I talk to everyone I meet and tell everything I know to everyone I know. I gather information and I curate information and I share information. I ask a lot of questions (I mean a LOT of questions). I identify problems in the current system and share opportunities for improvement. I pay my own way to conferences and am forward in suggesting that others pay my way to more. I'm energetic, passionate, and persistent because it is in my nature to be so, but also because I don't have a choice not to be. He is my child and my job is to keep him alive and well, and to guide him in the directions that his life takes him. It is my job to protect him at all costs, so I take the risks that I probably wouldn't otherwise take with the hope that I will find the missing puzzle piece that will cure this disease. One of these ideas will work, and I will keep trying until I find it. 
I'm in disbelief that it's all happening, honestly. I heard about it and I asked questions and I shared what I learned and I nudged and nudged some more, and at times I pushed and at others I pulled, but we're getting there and I can't believe it. I go to bed at night sometimes annoyed by my own optimism and excitement. It's a sheer and giddy joy knowing that this is all happening because I had the courage, and the responsibility as the parent of a chronically ill child, to speak up and encourage the re-design of a system that has the potential to save my sons life. I'm no longer imagining that potential because I'm working with other patients and clinicians and researchers and all stakeholders and I'm living this change. 
I cannot wait to share about all of the awesome things that will come out of our collaboration with CFF next week when we visit their headquarters in Bethesda! 
"Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has." -Margaret Mead

Every day is a long day

We just found out this week that Drew's secondary insurance decided not to renew us for the upcoming year like they have every year for the past 3. Instead, we have to save receipts and prove to them that we spend a certain amount out of pocket on our medical expenses on a monthly basis and then fill out a gazillion and ten forms and send it back to them for review to decide if they will cover us. It's as though they think that this disease gets cheaper to manage as time goes on, when the exact opposite is true. There are more medicines and treatments, taking more time and costing more money, and none of it keeps him from getting any sicker. The co-pay on Drew's monthly medicines is around $6,000, monthly, so hopefully we will be able to get their decision changed fairly quickly, but it's just something else that's been added to my plate, something else that I have to fight for, and I hate fighting all the time.

We're into our 15 day on/off cycles of inhaled Ceftazadime. When we finished our first cycle, Drew's cough was nearly gone and his appetite back up. We've been off for a week now, and just this morning he decided he didn't want to eat again. My gut (and the data that I have been collecting on his behaviors) tell me that that means he's getting sick. I hate that he's always sick. I'm always fighting with him to eat, to drink, to take his meds, wash his hands, use the bathroom. He takes a multivitamin that he recently started refusing because they no longer make the kind that he'd been on his whole life. They changed the flavor to orange and now he won't eat it. My husband tried it and said that it tastes like vomit with a little citrus flavor, so I can't say that I blame him, but he needs it and so I fight with him to take it. I fight with insurance over whether or not certain medications need prior autohrization and then fight with them again when I don't get what I need in time because there are so many stupid policies and procedures in place, that,  I might add, are direct barriers to adherence. 

Patients and caregivers dealing with chronic conditions need a break! If it weren't for our fight, nothing would ever get done. Yet we are the ones with the least time and the least energy left at the end of a long day, and every day is a long day. I'm tired and I'm annoyed. I'll be appealing the decision but it won't be without a fight. 

Stream of Consciousness on the NACFC, Patient Engagement and Hope

Last week I attended the North American CF Conference in Salt Lake City, Utah. After I'd gone last year, I made it my mission to attend every year until the value of having patients present was fully appreciated and I'm happy to report that we're getting there, but we still have a long long way to go. There were actually a few sessions this year specific to the value of including patients and families as a part of the care team, partnering together to improve outcomes and changing lives. My goal, leaving the conference this year, is to find some ways to quantify the value that patients/parents bring to the table and share with all 4,000 attendees next year how I believe that the missing puzzle piece in this quest to cure cystic fibrosis is us, the very people living every day so desperate for a cure. 

On my way to the conference I started to read a brilliant book called "Critical Decisions" by Peter Ubel. It is a passionate plea for patient empowerment with quotes like "The new revolution in medicine needs to be less about power and more about partnership. The best decisions are often shared." and "We won't achieve true shared decision making until we prepare physicians to interact with prepared patients." and "Modern patients have a duty to be informed in health care decisions." That last one really got me thinking. You see, the NACFC isn't open to just anyone. It's a conference held for 4000 or so doctors and researchers and other clinicians, but not specifically for patients or families. We're not totally excluded but it certainly isn't encouraged and definitely not made easy if you decide you want to go. There are some hoops that you can jump through to get yourself there, if you have the $575 to pay your way or are lucky enough to have someone offer to send you. 

The purpose of the conference is to share the latest and greatest in scientific research with others in the field to make better informed decisions regarding the health of CF patients and ultimately find control of and a cure for this disease. There's no doubt in my mind that that is going to happen, but without the participation of the ultimate stakeholder, the patient or the people that are fighting for them (families), it's going to take a lot longer.

"Modern patients have a duty to be informed in health care decisions." There was so so so so much valuable information that I came across at this conference that isn't available for others in the CF community, unless of course they paid their way and got the book of abstracts and sat through endless talks full of medical jargon that had even the most brilliant physicians googling terms. It's not fair that I, having fought and pushed and proved my value to our clinical team to the point where they sent me, am the only one who knows all of this stuff that could be life changing for so many. Stuff like the re-introduction of Atalauren to the drawing board for nonsense mutations. That, my friends, is hope for some people in some hopeless situations. And hope can carry you a long way. But no one knows about this but me and a handful of people who follow me on Twitter. Sure, many clinicians now know too, but there has to be an appropriate context for them to bring this up with their patients, all the while balancing the plethora of other valuable information that they think is important for their patients to know.

I learned about the dangers that inhaled corticose steroids pose to CF patients, increasing the risk of culturing non-tuberculous mycobacterium 5 fold, while really showing no signs of reducing inflammation in the CF airways. That's important, and perhaps even life changing for some. But unless you were a doctor or one of the few parents or patients privy to that information shared during one of the sessions at the NACFC, you are still in the dark, and that's not acceptable.

Doctors cannot know it all. Patients have a duty to be informed in their health care decisions, but as ePatient Dave says it best, "It's perverse to keep people in the dark and then call them ignorant." It is the patients themselves that have contributed to and participated in the research that these brilliant doctors and scientists are doing, but yet we do not have access to it. Bob Beall gave a heartfelt "thank you" to patients and families, for without them we wouldn't be where we are today. I propose a "thank you" and a program next year, sharing with them the very research that they enabled. The research will go farther, the puzzle one step closer to completion, if you embrace patients as partners.

I can almost guarantee you that I was one of the few who read nearly all of the 600 or so abstracts combined into the program that was the 2013 NACFC. Doctors don't have time to do that nor should they be expected to. Researchers don't have specific interest to do that, looking at the things that are relative or important to them and then moving on. But I, the parent of a patient with an incurable, life shorting disease, I don't have time not to. My ears listen carefully to every option, every alternative, every mild suggestion that there might be hope. My exhausted being and worn out kid try novel approaches and treatment options, in clinical trials and independent of them. Our doctors are deciding what information to share with us, some more than others, some better than others. Some share all of the knowledge and options that they know of, but it's impossible for them to know it all and it is our duty as patients to seek out what we need and work together with our clinicians to help ourselves and to help others.

I overheard a conversation between two (i'm assuming) doctors that was narrow minded and disheartening. During a presentation on the role of viruses in a pulmonary exacerbation, the speaker, who probably had a degree in some sort of medicine that I'm not even able to appropriately pronounce, was getting slightly deep into molecular biology and from the tone of the conversation in front of me, somewhat off topic. The one doctor said to the other, "This guy needs to move on. If people want to learn about this they can find it in the journals." But we can't! We can't find in in the journals because we don't always know what we're looking for. And with all of the information being shared here, these doctors and researchers aren't going to have time to do it, if they even remember to! And "the journals" cost money, something like $15/article. It's like our co-pays, no big deal to most families just needing to refill a prescription here and there, but our co-pays are over $6,000 every month, so yes, I will find ways to alleviate the burden and get us access to what we need because not doing anything is simply not an option. Putting this incredible information into journals and then storing them in a vault is not doing us any good.

All of this work that I'm doing to design a collaborative chronic care network for Cystic Fibrosis is for reasons like these. We "patients" are finding ways to get what we need. We are organizing ourselves and talking to each other and we are asking clinicians and researchers and other stakeholders to join our conversation since we haven't been invited to theirs. Everyone is so afraid of taking that risk, worrying about patients taking something out of context or their identity or reputation being tarnished because of something going wrong online. I can appreciate those fears, but I implore you, take the risk. Dr. Wendy Sue Swanson said it best at MedX during a Masterclass on engaging through social media - If you're a moron in real life than you're going to be moron online. Don't be a moron. Why am I the only person who doesn't seem to be afraid of things going wrong, but rather looking toward the possibility of all that could go right. What if my patient reported data could be appended to some highly clinical research to bridge that gap and complete that understanding, leading to the development of new treatments and therapies and ultimately curing this disease. Again, I implore you, take the risk!

I overheard another clinician speaking about how it's their (clinicians) responsibility to educate patients on how to do different treatments and that if they're not doing them appropriately then it's a failure on the clinicians part to appropriately educate. What if the patient understands perfectly well all about the treatment but just simply doesn't want to do it? I will agree with that doctor that it is a failure, but not a failure to educate. Rather, it is a failure to engage and empower and embrace that patient as a partner in their own care so that you together understand the relationship and how you can work together to preserve health.

If I create data and you create data and we share that data with one another and then we are able to identify things in our data, and then we get his data and her data and add it to our data, before we know it we have our own little research going on. The value of that data shouldn't be diminished. We control our research because it's our data. The data that researchers have is technically our data too, but somehow they own it and we can't always get it back. So we (patients) started collecting data on our own and learning things about ourselves, individually and collectively. Since we can't access all of the brilliance that already exists, we are accessing what we can and are making informed medical decisions with it. Just imagine how much father we could go if we put this all together. It is not rocket science, but rather an activity taught even to my preschoolers and it's called teamwork.

Toward the end of the conference I was speaking with some folks from a variety of positions of power and influence in the CF community, both within and outside of the CF Foundation. Both asked the same question - what are we supposed to be doing? How do we engage patients in ways that are appropriate and useful? How do we curate information for our patients and families? How can we be truly helpful? My answer to them was simple: Take a risk. Join us. Participate in our conversations. Listen to our feedback. Embrace us as partners, not recipients of some service or tool that you offer. Show us that we are truly in this together by holding our hand and combining our efforts and working together to create and test and implement tools and solutions that will aid in the development of a cure for this disease. I hope that they took me seriously because I meant it.

There's so much more that went on at the conference of value to me and to patients and their families that I don't even know how to put it all down on [virtual] paper. But I'm putting out there right now that I want to help you. I have the resources from the conference. I would love to help whoever needs my help by searching through the abstracts and posters to find any information that might be of value to you. Email me, tweet me, Facebook message me. I will try to put as much important information out there as I can, but if there is something that you're interested in or scared about or just wondering if there was any discussion around, please ask me. I want to help. I believe that we are the key to the cure.

Small Victory

Drew has been culturing Achromobacter, an antibiotic resistant bacteria, in his lungs since January. We have had several hospital stays, a couple of procedures, endless antibiotics and even more cultures done in our quest to tame this beast. It's not causing any terrible harm, as far as we can tell, yet. His CT scans don't look any different than they did two years ago and he is growing well. It just seems to cause this little, annoying, lingering cough to pop up from time to time and it won't go away without antibiotics. And when it comes, he doesn't want to eat. But he needs to eat, and a lot. Drew has been off of antibiotics for no period of time longer than 2 weeks since last January and that's terrifying. You see, he's only three years old, and if we pull out the big guns now to fight this, I'm afraid we won't have anything left in our arsenal when we really need it. There is an abstract in the 2013 North American CF Conference Program that states, " Once colonized, achromobacter appears to lead to a significant decrease in FEV1 and increase in hospitalization rate. An average decrease of 16% of FEV1 over an average of a 48-month period was observed." He's too young to do PFTs to determine his FEV1, but let's suppose he's at 100% today. By age 7, his lung function would be at 84%. By age 11, down to 68%. Before he is 20 years old, if Drew continues to grow Achromobacter, his lung function would, theoretically, be down to 36%, low enough to place him on the transplant list.
As I've spoken about many times on here, I track everything about Drew in an attempt to learn more about him and about his CF and how his CF compares with the CF that other people have. It's such a unique disease in that everyone is affected differently. I've been tracking using PersonalExperiments since early this spring, and have gotten some very useful data. This data, in fact, even helped to prevent an admission at CHOP this summer. I scour the internet and medical books looking for answers that could help to explain different aspects of this disease that I don't always understand or don't agree with. I look for novel treatment options and I take what I find to his doctor. When I ask her questions, she does her best to answer, and always offers to help me to find the answers that she doesn't have. I go to conferences, I talk to everyone I meet, desperately hoping that someone will mention something that brings me to my "Ah-ha!" moment and I can solve this mystery and put CF behind us. I push our team at Cincinnati Children's Hospital to move faster and work harder to try new techniques that, for me, have provided insights that are changing things for us. If they work for us, they can work for others, and the new learning that will pour forth could be eye opening to even the most distinguished doctor or scientist. I'm talking about insights that I, the patient, bring to the equation.
When Drew first grew Achromobacter last winter, we immediately tried IV antibiotics. Even though this bacteria is antibiotic resistant, sometimes some antibiotics work. For Drew, the IV's didn't. After the IVs we tried an inhaled antibiotic for 30 days, to no avail. From there we repeated our course of IVs with different antibiotics followed by a bronchoscopy, a CT scan, and more IV antibiotics. The achromobacter remained. At this point we were resigned to the fact that Drew was colonized with this bacteria and it was unlikely to ever leave him. That did not mean that we would stop our fight against it. We decided to start cycling him 30 days on/off an inhaled antibiotic, as many with CF who are colonized with a bacteria do. The idea is that if we can't get rid of it, we try out best to suppress it and keep it from causing more damage.
When Drew was on an antibiotic he was symptomless, but once we came off, the symptoms quickly returned. During one of our early 30 days cycles, we noticed that his symptoms would go away for about 15 days and then start to return, even as we remained on our antibiotic. It was easy to keep track of this with the tools I was using. We decided to try another angle, 15 days on one inhaled antibiotic and then switch to another for the next 15 days. That technique managed to suppress symptoms for almost 30 days, but the cultures were still showing that achromobacter was there.
At this point, we were no longer really trying to eradicate, but rather trying keep Drew symptom free. The 30 day cycles split between two antibiotics seemed to be our best bet, but after the 30 days was up the symptoms would immediately return. We took another angle and thought that maybe because of the severity of his tracheomalacia and the propensity of these inhaled antibiotics to cause bronchospasms and a degree of airway reactivity that he wasn't actually inhaling as much of these medications as we thought or as necessary to control this bacteria infection. We decided to do 90 days on inhaled antibiotics, alternating between two different drugs every 15 days. For 90 days, Drew was symptom free (except for a brief stint during the summer when he got rhinovirus). When we cultured in early September, the achromobacter was still there. We decided that it was time to just run with the idea that we would keep this bacteria suppressed as best we could by cycling 15 days on/off of an antibiotic that seemed to really best control his symptoms, despite his achromobacter being totally resistant to it in the lab.
We began our first 15 day cycle in early September and Drew was happy and symptom free. He started school without incident and continued happily about his days with his cough nearly non-existent. On the last day of our 15 day "on" cycle, I happened to be looking over the data that I had been collecting on him and realized that the only combination or course of inhaled antibiotics that we hadn't tried was this one particular drug for a straight 30 day course. We had done it on and off for 90 days in 15 day increments with a second antibiotic mixed in. We had tried other antibiotics for 30 days straight. But the use of this particular drug for a full 30 day course hadn't been tried, and I, with agreement from his doctor, decided that we needed to at least try. I was the one who had decided to cycle him 15 days on/off because there was evidence in the data that I collect on him that his symptoms seem to return after 15 days. I was also the one who, desperate to try anything that we hadn't already tried, decided at the last possible second, to continue our first 15 day "on" cycle and turn it into a 30 day "on" cycle. I had agreed with the doctor that if this didn't produce different results that we would have to turn to either 30 days on/off or 15 days on/off, that he couldn't simply remain on antibiotics nonstop, forever.
So we pushed through, for 30 days, 3 times a day for 30 minutes on top of the 3 times of day for 30 minutes that we were already doing for normal, routine, maintenance medications. We were spending nearly 3 hours a day every day doing treatments. Drew hated it. We hated it. But we saw a clean culture!
We got a clean culture, a culture that showed no growth of achromobacter, our first since last January.We weren't going to announce this initially. We thought we would keep this information to ourselves until we had a second confirmed culture free of achromobacter.  But in the world of chronic disease, we celebrate the small things.
The next day Drew got the cold that everyone else in this house had been fighting and the achromobacter came back. I know it wasn't really gone, but it was suppresed, and the extra mucus from his cold just stirred everything up and the bacteria is back and causing problems once again. We're back on the antibiotics, going to cycle now 15days on/off indefinitely. Because we were able to suppress it to the point that it wasn't showing up on a culture, albeit for short period of time, I will push forward on my mission. I will continue to try in whatever ways reasonable to keep it from causing him any harm. I will not accept a lung function decline of 16% every four years. But a clean culture is a clean culture, right? A small win, even for just a very brief period of time, is still a win. We will fight on!