Monday, December 16, 2013

"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

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