Make Every Breath Count

Several months ago, I agreed to be the State Advocacy Chair for the CF Foundation here in Cincinnati. I haven't had many people agree to advocate with me, which is disappointing considering how little work it requires and how much of a difference you can make. Here is a link to what we as advocates are asked to do. If you are reading this and interested in helping me make a difference, shoot me a email, or click on THIS LINK to get signed up to receive advocacy email from the CF Foundation.

The CF Foundation just launched their yearly "Make Every Breath Count" campaign, were we, as advocates, agree to meet with our members of congress while they are home from Washington on break later this summer and fall to discuss the Cystic Fibrosis Foundations Policy Agenda. We need your help to ensure we have the support in Congress to continue vital CF research, make sure new therapies are approved quickly and safely, and guarantee that everyone with CF has access to the care they need to live. It doesn't matter where you live - there are senators and congresspeople everywhere that need to hear from us about the importance of making decisions that will affect the care of our children.

Here are a few links to some of the information that we will be discussing at the meeting that I am hoping to set up with some of my decision makers later this month. Some of these are specific to the state of Ohio, but you can find information on your state by clicking HERE.

Cystic Fibrosis Facts: The Cystic Fibrosis Foundation’s Policy Agenda
What CF is and how the disease affects people in your state

http://www.cff.org/UploadedFiles/GetInvolved/Advocate/AdvocacyToolkit/Fact-Sheet-Ohio-2011.pdf

Cystic Fibrosis Treatments: From Bench to Bedside
Why the National Institutes of Health (NIH) and Food and Drug Administration (FDA) are important to people with CF

http://www.cff.org/UploadedFiles/GetInvolved/Advocate/AdvocacyToolkit/NIH-FDA-Handout.pdf

Medicaid & Medicare Provide Essential Protections for People with Cystic Fibrosis
Explains the need to protect the Medicaid and Medicare programs that nearly half of all Americans with CF depend on for their care

http://www.cff.org/UploadedFiles/GetInvolved/Advocate/AdvocacyToolkit/Cystic-Fibrosis-and-Medicaid-2011.pdf

CF Drug Development Pipeline
Demonstrates the progress being made in the search for new treatments and a cure

http://www.cff.org/UploadedFiles/GetInvolved/Advocate/AdvocacyToolkit/Pipeline-Explained-March-2011.pdf

I hope that you can find a few minutes in your day to help out with advocacy. For everyone who ever has asked me, "How can I help?", this is how.

One final note, great news out of Pennsylvania today, where the University of Pennsylvania received $10 Million to create a center for Orphan Disease research and therapy. If you all know me, my favorite line is "CF is an ORPHAN disease so it receives no federal funding". Now there will be an institute dedicated to the research and therapy of CF and the other 7,000 diseases that aren't supported by our government. These diseases, while many, only affect about 200,000 people, apparently not enough for the government to care about. Your advocacy can help to change that!

Its so hot in Cincinnati

It has been SO hot in Cincinnati the past couple of weeks that we've just been keeping busy with indoor activities - storytime, museum center, recreations outlet, reading books, playing games. We're all about ready to get outside but we're just waiting for this horrible heat wave to break. Drew has some trouble outside when its this hot. You can tell everyone is anxious to get outside, but after about 15 minutes, Drew's breathing is heavy and he's slowing down. A cold drink and some AC and he's back to normal. He has been so healthy this summer (knock on wood) and I just hope it continues into the fall and winter. I like not having to deal with all the extras CF brings.

I had my first night of volunteering last week at Children's NICU and it was pretty awesome. There is something very humbling about talking with parents who have been in the NICU with their sick child for 8 months, or who are in there and potentially not leaving there with their baby. It helps to put your mundane, small problems into perspective. Most of the people I talked with were grateful to have someone who knew how they were feeling. Some wanted to talk. Some didn't really. Others told me all about their kids, while others asked all about mine. It wasn't as hard to be back in the NICU as I had thought it would be. Seeing all of the care that the doctors and nurses give there is just amazing. I think I've said it before, but I'll say it again. I'm not sure where these people come from, but I'm glad they are there doing what they are doing. Because it takes a special kind of person to care for sick kids the way these people do. I'll be volunteering every other Wednesday evening and I'm sure it will be different every time. Some of the people I talked with had just gotten into the unit that day and others had been there for weeks or months. I talked to parents and grandparents and got something different from everyone. But the one thing we all had in common was the will and desire to help our kids to get better. Its a really cool program, Parent TOUCH, and I hope that they do roll it out to the rest of the hospital.

We're getting ready to go on vacation in about 3 weeks and we're all excited! Ella had summer camp at her preschool last week and I got a good portion of the house cleaned. Shes going again next week and I'm hoping to wrap it up. Then we will have a week together before our week at the beach, and before we know it, summer will be over. I have to say that the kids are at a great age this summer to do lots of fun stuff together. I know as they get a little older and more independent things will get even better, but all things told, we had a pretty great summer!

Anti-Inflammatory Foods

Here is a link to an interesting article that I found on another CF blog about foods that have anti-inflammatory properties.

http://www.healthcastle.com/anti-inflammatory-foods-keep-you-cool

Time off

Last night, I spent a good 45 minutes writing an update on Drew. When I clicked "Publish", the whole thing disappeared and I was to mad to re-write it. I'll give it another go now, but its never as good the second time around.

One afternoon last week, I got a call from Drew's CF doctor, Lisa Burns. She was our fellow from day 1 and recently accepted a full time position at Childrens, and we decided to stick with her. I have no problem with our other doctor, but I felt really connected to Dr. Burns and I'm happy that she's hanging around. Anyway, she called because she was going through some of our paperwork and remembered that we had discussed having another bronchoscopy done this summer when Drew was healthy. At the suggestion of setting up an appointment, I pushed back pretty hard. I told her that I do get why they want to look - if they have a good understanding of the physical shape of his airways it may be easier to distinguish if the sound that accompanies his colds is just his malacia and other abnormailites or if it is a nasty bacterial infection - but I need to understand the benefit over the risk because he always seems to get sick when we have one of these done. She said they would want to see if there was any improvement in his malacias. I told her that I hypothesize that they would say its slightly better but that's about it, and honestly how would that change any course of action we take. She agreed. Then she said that they would want to get a good culture for pseudomonas and I was like we caught the last two orally. There was a report from Australia a few days ago that seemed to indicate that it wasn't any better to get a bronch sample than an oral one. She was like well, we just dont know if we can trust his throat ones because of the collapse he has when he coughs. I get that. But because we were able to catch it before with an oral sample, my fear that there is something horrible going on that we are missing has subsided. Our last two cultures were negative for just about everything, and the previous two had been positive for pseudomonas, so I believe its gone, or at least not causing any problems. She said that if he does have it then we would want to cycle him on some inhaled antibiotic, like Tobi. But to her point above, the reason we decided to go with IV antibiotics was because of the theory that the collapse from his malacia was preventing the appropriate amount of antibiotics from being inhaled. Really not worth to much more discussion since we don't even know if he has anything.

So she said she would talk to Dr. Wood (the doctor who actually performs the bronchoscopies) and if they both decide its best to get one while hes healthy then she would let us know and we could get it scheduled before the germy fall season. I got this email from her yesterday:

Hello Erin,

I spoke with Dr. Wood further about looking at Drew's airway. He agreed that if we did not need a culture for any reason then we could postpone looking at his airway. We should be able to assess how well he is doing based on the frequency of antibiotics, admissions, etc. Hopefully he will have less infections during his second year of life since he has already seen some of the viruses this past year. Let me know if you have any questions.

Lisa

Yay! Have I mentioned that I love these doctors? I feel like they will really listen to me and my questions and concerns and still make the decision that's best for Drew. If they really felt like having a good look at his airways would prove beneficial going into the fall/winter, then I was fine getting it set up. But a bronch means anesthesia and an IV, both coming with stupid hospital risks that I don't want to take if we don't have to. So for now, we will just enjoy and appreciate our health until some other procedure is required.

I haven't spent much time on the blog this summer. I think its because Drew's been so healthy (knock on wood) and sometimes I just wanna forget about CF, to the extent possible. We still have two treatments every day, 30+ minutes of inhaled medication and Vest treatments, daily medications at breakfast and dinner, and enzymes before everything we eat. But in between all of that, we're playing at the splash park and with the train table and reading books and watching movies on rainy days. Not spending hours on the phone and the internet trying to get things scheduled and questions answered and prescriptions approved. Its nice to have some time off from CF, even if its just an hour or two of my day.

One final update. Shortly after I posted about Drew's desire to eat anything but peanut butter and fruit, he changed his mind. I'm not saying he will eat anything, but we've had corn dogs, hamburgers, spaghetti-o's, ribs, and chicken curry, and he ate them all without hesitation. Veggies are still off the list, but per some recommendations, i'm going to try to sneak them into things like smoothies and casseroles that he will eat. We'll see!

Town hall meeting

I went to a CF event tonight that Martin was actually able to attend as well. I will admit, it wasn't exactly what I was expecting, but I'm not really sure what I was expecting. Maybe I should have read down a little farther on the email, but all that I saw were words like "town hall" and "research updates" and "Dr. Clancy" (who you may remember from this post). I will attend any and every CF event that I can to get every bit of information or update or support that anyone is offering. I want to understand all that I can understand, and know everyone I can know.

After a few introductions, Dr. Clancy gave us the "quick and dirty" history of himself and his involvement with CF. It comes off as a passion, really. You get giddy with excitement for him when he talks about the research that he's been a part of and how much hope there is for a cure. I saw him speak at the Thomas Boat Research Symposium a few months back, and while it was a little on the clinical side, it was still awe inspiring. When I think about Drew's future, I can't not imagine him as a part of it. He might be the very reason Drew has a future.

While he was giving his little talk, he mentioned that he would be happy to help out the foundation and the families in any way that he could. My mind lit up. There is an event that the CF Foundation runs called Make Every Breath Count, where advocates meet with their local decision makers (senators, congressmen and women, etc.) to let them know how valuable their support is in the vital programs that affect those with Cystic Fibrosis. In the State Advocacy position that I volunteered with a few months ago, we already do a fair bit of emailing and calling these state representatives about current events and issues that affect the CF community, but the Make Every Breath Count event this year is shooting for face to face meetings. I get it. Being in front of someone has far more impact on a number of levels, and I'm hoping that we can rally some government support.

So back to Dr. Clancy. At the end of his introduction, he mentioned that he was here to help, so I jumped on it. I mean, if there is 1 guy who is going to make a difference and seriously knows his shit about CF, this is him. I introduced myself and told him about Drew. Everyone always already seems to know or have heard about Drew, what with all the extras that came along with his CF. All things told, he's doing great. I digress. I introduced myself to Dr. Clancy and told him about my involvement with the Make Every Breath Count event and he said he would be happy to help! Winning! I gave him my card and he jotted down his email address and # for me. I am seriously so excited about this. Our "friendship" will meet it's demise when I bombard him with emails and phone calls of questions to the point where he asks to move to a new hospital. Just kidding, I'll stick to Dr. Burns for that for now. I think she takes some of my questions to him anyway.

So, high on that success, we jump right in to the purpose of the meeting, which turned out to be essentially recruitment for upcoming events. Maybe recruitment isn't exactly the right word, but events and goals for events were discussed and volunteer needs were highlighted. It was a good meeting, full of brainstorming ideas and excitement about big events. But when I looked around, there were probably only 20 people there, 25 max. Four of them worked for the foundation. Three of the people at my table had no direct connection to CF and were just involved for purposes of philanthropy I guess. I saw one other CF family I recognized, and one CF patient. Hello?! Where was everyone? Why aren't all CF families at these things, rallying support, showing support? I just don't get it! The very second that Drew was diagnosed with CF, I was in this 110%. If that means annoying my friends and family with emails knowing (or hoping) that they will support me when they can but will otherwise not care, I'll do it! If I have to lug my kids all around town asking for donations for the different events, consider it done. It's a pain, I get it. But what's worse is seeing your kid struggle to catch his breath running around in the playroom, or fighting with you because he wants to play with his twin sister but instead has to sit hooked up to a breathing machine and a Vest to make sure his lungs stay healthy. That sucks. And if the parents and families and friends who see this reality and live this reality aren't supporting the foundation, then who will? The government doesn't. Maybe after my Make Every Breath Count meeting with Dr. Clancy on my side they will :)

I hope everyone who reads this can just catch a glimpse of my passion. Know that I'm really not as annoying as I may come off asking you to participate in or support my event all of the time. I know not everyone can do everything i ask, but if I don't ask i'll never know. I'd rather have you say no to me then to pass on the possibility of a yes.


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Peanut butter and fruit

We've been having some problems with food lately. Drew won't eat anything other than fruit and peanut butter. If it were Lily or Ella, it wouldn't be a big deal - eat if you're hungry, don't if you're not. But kids with CF need a lot of fat because their bodies don't produce the enzymes to break it down and allow the body to absorb it. Drew takes artificial enzymes every time he eats that do the same thing that the natural enzymes you and I produce do, but he still needs an abundance of both fat and salt in his diet to ensure proper growth. When all the boy will eat is peanut butter and fruit, it makes things a little tricky.

He wasn't always picky. It started gradually, with him pushing away most veggies. Then he got weird with meat. He use to devour hot dogs and now won't touch them. For a while, he loved chicken nuggets and spaghetti and meatballs and grilled cheese. Then he would only eat chicken nuggets if you left them whole as opposed to cutting them. Weird, I know. Then, slowly, over the course of the last month, he has decided he's not eating anything that's not peanut butter or fruit. Well, except for breakfast where he is usually willing to eat yogurt or oatmeal or cream of wheat.

I know peanut butter is both salty and fatty, perfect for a CFer, but can one really survive on peanut butter alone? Every meal, I offer him the same thing the girls are getting. He sits for 20 minutes, not protesting, just not eating. If you try to put something in his mouth, he clenches his jaw, turns his head and pushes you away. After we are all finished eating, I will offer him peanut butter - on toast, between crackers, in a blob on his tray - and he scarfs it down. I know he's hungry because he will whine and complain and open the pantry hoping for a goldfish or a graham cracker (two other things on the list of things he will eat) but once he's up in his seat the battle of the wills begin. I refuse to start with peanut butter every night. And again, if it were the girls I wouldn't force the issue, as I know sometimes kids just aren't hungry. But I worry about him not getting enough calories in. You might laugh at that given his size, but if he gets sick, I'd rather have a few extra pounds in our back pocket to spare.

Today I tried to sneak grilled cheese by putting peanut butter on the bread. Wouldn't you know that he was taking a bite, chewing it up, and spitting back out the bread and cheese. He was essentially sucking the peanut butter off of it and giving it back to me! I'm at a loss.

The dietician has a close eye on him, and when push comes to shove and he won't eat anything (there are meals where he straight up refuses to eat anything, peanut butter included) we give him an Ensure. He loves that stuff. I think it smells like formula. But we just need to make sure that most days he's getting in the fat that he needs and learns that skipping meals isn't okay. I'm still hopeful that it's just a toddler phase and he'll get over it soon. In the back of my mind, I fear the G-tube, but i guess you just do what you've gotta do. In the meantime, I'm open to any and all suggestions.


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One Day at a Time

I was supposed to start volunteering for the ParentTOUCH program tonight but had to cancel due to a sore throat. The last thing they need being brought into the NICU is germs, so unfortunately I had to postpone. I'm hoping for a relaxing night and to get all unpacked from our 10 day adventure and settled back in to our house.

Drew woke up the past couple of mornings with a little fever. Some Motrin took it down, but its making me think that his ear infection is back. I had asked the pediatrician about tubes the last time we were there for Lily, whose had like 6 ear infections this year, and she said that they don't usually do tubes if the kid gets an infection and then antibiotics get it to go away. Its more for if they can't ever seem to get rid of one infection. And that seems to be whats going on with Drew. I have a call in to the CF doc to see if they will take a look at him and get their opinion. I've heard that many CF kids end up with tubes because of their inability to appropriately clear secretions (that mucus clogs all tubes, not just lungs, so sinuses are usually affected too). I wanted to see if they had a different antibiotic they would recommend since ammoxicillan, omnicef, and azithromyacin all haven't been able to get rid of it. I'm starting to get the feeling that the recommendation for tubes is right around the corner. And i'm fine with that, especially if it means not having to be on antibiotics that aren't doing anything anyway. I guess we'll see. There was no fever this morning so maybe he's fine.

I have to say that we stuck to our treatments and routine 100% while we were away. Sometimes I think it would be nice to give Drew a day off, but what would be really nice for Drew is if he stays healthy which means no days off. We've switched him off of Albuterol and onto Atrovent because for whatever reason it seems to work better for him right now. He only get Hypertonic Saline once a day now, but when its really hot out I sneak in another just to try to replace what he loses sweating. I'm also trying to keep him super hydrated. He usually doesn't want straight up water but he will drink it with a splash of apple juice in it. I'd like to get him into gatorade or some other drink that's heavy up on the sodium. He eats a ton of peanut butter so that's good for us. He definitely struggles with his breathing when its hot and humid out, and even more when hes running around the house playing. That's mostly the malacia (we hope) and not his lung function. We're supposed to have a hi-res CT scan before the end of the summer but I've put off scheduling it until we're done with vacations. He always picks something up in the hospital, and he's gotta be put under for this scan so I'd just rather wait and enjoy our healthy, fun summer. I'm hoping this fall and winter aren't as bad as this past one, but I'm just trying to take things one day at a time.

Whirlwind vacation

We're in the homestretch of our east coast vacation and have had a great time. We've had the opportunity to see a lot of friends who we haven't seen in a long time and are definitely bummed that we still won't get to see others.

Drew has done really well here. We haven't skipped a beat with his treatments, even taking the Vest and his nebulizer with us to a friends house in Princeton yesterday so that we didn't have to cut our visit short to get home and do the whole routine.

It's definitely interesting seeing friends who haven't yet met the twins. They read the blog and keep up with our goings on via emails and Facebook, but when we meet in person they have all the same questions that many of our friends from Cincinnati had when they first met Drew. They get to see me Clorox off restaurant tables and high chairs, use crazy amounts of hand sanitizer, and administer enzymes before every meal, snack or drink of milk. It's secondhand to us now, but when you don't see it everyday it surely looks like a lot of work. I've eased up over time, but I'm still extra cautious because I know that Drew has a pretty high propensity to pick up germs that turn into nasty infections and the way those infections turn our world upside down.

A few weeks ago, I asked Drew's doctor about swimming in our little backyard pool. She said that as long as we were cleaning it out regularly (read always empty the pool after use and clean it out with some bleach before using it again) that she wasn't to worried. The concern is pseudomonas, which grows in water. We just got rid of it (knock on wood) and I'm happy to take any and all precautions to insure that it doesn't return via some preventable method. Public pools are fine for him, and are even an encouraged form of exercise because the chlorine kills the bacteria and keeps the water clean. His doctor told us that we probably shouldn't swim in friends or neighbors little backyard pools that we're not responsible for cleaning because we don't know how clean they are or what Drew could pick up from playing in them. Even if it looks clean, it might have been sitting for just long enough to grow a little slime. We used a friends water table yesterday, and I will admit that it made me a little uneasy. It had just been filled that day, and Drew was having the time of his life splashing and playing, and that always helps to ease some of my anxiety, but I guess as his mom I'll always be a little bit apprehensive of things I can't control, bacteria being one of them. We're going to another picnic this afternoon and were told to bring along bathing suits. I know drew would love to play with the other kids in the pool but unless I can clean it all appropriately, my nerves get the best of me and we conveniently forget swimsuits.

It's easy for people to tell me to relax, but when its your kid you're trying to protect from a potential life threatening infection, you'd look like a crazy person too without a second thought. It's impossible to protect him from germs. Some germs are good and will help him to build up a resistance, but things that I can control, even if it's only in my head and for my sanity, i'll go ahead and take the extra steps.

Finally, a blogger friend who has a daughter with CF is waiting for some culture results. They just developed a new cough and are working on determining the cause. Anything new or different is always scary. It's hard to not have your mind go to the worst case scenario or let stress and wonder and worry get the best of you. I liken it to someone recovering from cancer and having to go back every few months for follow ups. Waiting for those results can cause some serious stress. Even if you have a positive attitude, there's just never any telling what's going to turn up. Anyway, if you have an extra prayer in your back pocket, this family could use it.

Happy 4th! I'll post some pictures of our PA adventures once we're back home.




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