Thursday, May 29, 2014
Charlie was diagnosed with staphylococcus aureus at 4 months old (so back in 2010). This is common and was asymptomatic so it wasn't treated. Staph aureus is a relatively ubiquitous bacteria that is found on many healthy peoples' skin and in their nasal passages. Staph aureus is a gram positive coccus that for the most part doesn't cause huge problems in CF patients so we didn't worry too much. If you wanna know what it looks like growing on a petri dish- you can typically tell a staph bacteria because it grows as very small, tan, symmetrical round colonies.
In October of 2011 when Charlie was a little over a year old we got a call from the head of our CF Clinic- never a good sign, right? He had called to tell us that Charlie had cultured positive for pseudomonas aeruginosa (yes, there are actually different subtypes of pseudomonas-- 99% of the time people in CF circles are discussing P. aeruginosa however). P. aeruginosa is a gram negative bacteria that can create a biofilm after long term colonization, thus making it hard for antibiotics to get to them. On a petri dish it is distinguishable by smell (stinky with slight grape undertones [yes microbiologists smell bacteria like other people smell wine lol]) and large, glossy colonies that are tan with a slightly greenish tinge. In addition, pseudomonas can be either aerobic or anaerobic, meaning it can grow without oxygen. This means that even if it gets covered in mucus it can still thrive.
Needless to say, I was pretty freaked out. While pseudo is very common among CF patients, most are a bit older when they colonize it, how did Charlie get it so early? We very purposely kept Charlie at home with a nanny so he wouldn't pick up all those daycare germs- how could this happen? Well, it turns out pseudomonas is pretty ubiquitous too. Does your kid splash in puddles? pseudomonas. Does your kid play in dirt? pseudomonas. Does your kid ever play outside? pseudomonas. Does your kid have interaction with other kids? pseudomonas. Pseudomonas can be found in dirt, water, on skin and in hospitals; like I said, it's everywhere. Because it's pretty much everywhere I don't even bother restricting Charlie's play outside all that much.
One note that I will make, though, is that Charlie had started swim classes about a month before his pseudo diagnosis. It was a humid area and I can say first hand that the pool was disgusting. Our first class I saw a baby puke in the water and then watched it just disperse in the pool. EW. I'm sure it was filled with all sorts of gross puke, pee, snot, and lots of other bugs (the amount of kids that went in that pool each day was staggering). When he was diagnosed I immediately asked about the pool and was told that there's usually enough chlorine to kill any pseudomonas pretty quickly. However since then I've read numerous articles about how urine can render chlorine less effective, and I'm sure this pool had plenty of urine in it. We stopped going to the swim classes after the positive culture because I personally believe that's how he got it, despite what the doctors said. The timing was too close and the pool was filled with gross things (and the humidity could have aerosolized a lot of it too). That being said, this is totally anecdotal and also, I am often wrong.
Anyways, the normal course of action for OUR clinic (they all do this differently) is to do a 2 month stint of inhaled Tobramycin, commonly known as TOBI. Luckily his pseudo showed up to be sensitive to tobramycin (there are strains out there resistant to antibiotics) so we started doing that twice per day. In addition they also started him on azithromycin- this is an oral antibiotic. It doesn't directly kill pseudo but it weakens its reproduction so the TOBI has an easier time working. In addition they changed his classification from CF1 (pseudo-negative) to CF2 (pseudo-positive) so they can schedule all the negative CF patients on different days than the positive ones -- cross contamination worries and all.
Luckily this whole time he was asymptomatic- he gained weight, didn't cough, and acted totally fine. The TOBI was a pain because it adds 30 minutes or so onto each treatment, bringing our tally to 2 hours of treatments per day. After 2 months he was checked again and it was found that he was still positive. This was a huge bummer. The CF clinic then gave us the option of coming in for a round of IV TOBI. We immediately thought we had to go, so it was wierd that they even gave us the option. After discussing it at length we got the impression the doctors didn't think it was a great idea to have him come in, but they were giving us the option if we wanted to. The reasons they didn't want to start a course of IV antibiotics were:
1. Charlie was asymptomatic
2. Charlie's pseudo still showed as being antibiotic sensitive
3. Charlie was a very high energy 1.5year old and it would have been a struggle with IVs because he was very grabby
4. It was the middle of winter and there were even worse bugs in the hospital than pseudomonas
5. There's no evidence that IV TOBI works any better than a course of inhaled TOBI+Azithromycin
So with those facts in our head, and the alternative being 2 full weeks of inpatient antibiotics (they wouldn't do home IVs because he was so young) that might not even work for a bacteria that wasn't yet causing problems, we decided against the hospital visit. That was a hard decision, but looking back I'm so so glad we didn't go in.
So we continued with TOBI, switching to a 28 day on/ 28 day off cycle. The off-TOBI months are soooooooo nice, you get an hour back in your day! And less nebulizer pieces to wash too :) His cultures came up positive after positive from October 2011-May 2013. Yup, he was positive for THAT long. But it was never a big deal, he was almost always asymptomatic unless he was sick, which wasn't very often. And then last May we got a negative throat culture result! We *kind* of celebrated, we were very happy but pretty doubtful. Charlie was/is at an age where getting throat cultures isn't easy and we don't really trust them all too much unless they say something bad. For this reason, and the fact that bacteria sometimes hides deep down in the lungs where it can't be cultured, the CF clinic requires one YEAR of negative throat cultures before being considered officially "negative'.
We never thought that would ever happen and just kept plugging away with TOBI. In the year that followed Charlie was on quite a few antibiotics (levofloxacin, augmentin, bactrim, IV cefeprime, and IV tobi) in addition to inhaled TOBI and azithromycin. Amazingly, he kept culturing negative! And this past CF Clinic visit we just got the great news that he has cultured negative for an entire YEAR! He is officially pseudo negative and back to CF1 status! We'll find out next week if we can stop the TOBI/azithromycin, but in the meantime we're very happy that it's gone! At least, we think it's gone, it could still be lurking deep down in the very bottom of his lungs, but for now I won't think about that :)
So there is our [long] pseudo story-- I know it's a really scary occurence and that every child is different, but I hope it gives some mama's out there a little hope that you CAN get rid of it (even if it takes what feels like forever) and living with it can be totally manageable as well.
FYI- the rest of the clinic went great (aside from Charlie sprinting back and forth in the exam room for 2 hours like a tazmanian devil). Charlie's weight is right where it should be, 75th percentile for BMI, and his lungs sound clear. He's the biggest 3.5year old that I know, weighing in at 42.5lbs and 42.5inches tall!
Tuesday, May 27, 2014
Here's how I envisioned this appointment going:
Robb: Dude, I snore a lot. My wife made me come here.
ENT Dr: Crazy, dude! We see that a lot, wives are the worst! Here's some pamphlets with ideas to help with snoring that aren't earplugs and snore strips. Here's a mouthguard that might help. Also, I can tell magically that you don't have sleep apnea.
Robb: Cool bro, catch ya later!
ENT Dr: Good luck, man!
*High Fives All Around*
It turns out, however, that the appointment did NOT go like that. And also, doctors don't refer to their patients as "dude" or "man".
First, Robb was convinced he was the in the wrong place.
I reassured him this appointment was totally no big deal, they're used to seeing dudes that snore, and not to worry. Whoops, I was totally wrong on that one.
See this shit? Apparently they just "had" to stick the entire thing up Robb's nose. Pleasant, no? It gives me the heebies just *thinking* about it. Robb was NOT happy about it and apparently it hurt like hell, but not wanting to be a wimp will get you to sit through almost anything, evidently. Also, he needs 3 surgeries to fix his deviated septum, enlarged tonsils, and some other stupid minor problem that only *might* fix the snoring. So obviously we're not doing that. Which means the whole appointment was pointless. Awesome.
Then Robb came home and had to mow the lawn, which gives him allergies from the grass, which further irritated his sinuses.
I'll take my Wife of the Year Award now.
Monday, May 19, 2014
We've been to Bluff Point a few times before but it was either pre-Charlie or only for a quick visit because Charlie was still a baby. Now that he's older it's a lot more fun and better excercise, too! There's a 3 mile loop that we accidentally walked (I thought it was only 2 miles) that almost killed Charlie and I. After 1.5 miles Charlie kept asking to be carried and I was already exhausted from my morning Jillian workout so it just about killed me to carry my 40lb son that far LOL. But I did it and got another killer workout in to boot haha.
Robb was able to join us a few weeks back, but we went for a shorter hike, maybe about 2 miles. This made it much more manageable but Charlie still insisted on being carried because he remembered how much fun it was the last time haha. Since Robb was there he could carry him on his shoulders which meant I just had to carry the bag. Score!
I think today for our day off we will stay home so I can finally get some things done around the house! Maybe I'll even see if I can get some layouts posted on my scrapbooking-ahem,not hiking-blog. Imagine that ;)
Saturday, May 10, 2014
The above photos are a shadowbox I made for my mom this year. She has a beach house here in CT and Charlie LOVES to go there and play in the sand. Since he loves it so much I decided to make a little 8x8 layout with some beach photos from last year. I then put the mini layout in a shadow box that I filled with sand and seashells that Charlie collected from the same beach-- I hope she likes it! I used Noel Mignon's Carousel kit for this project.
And here's a little extra inspiration in the form of mother-themed projects of years past :)
If you're looking for some yummy treats to make for a Mother's Day brunch I have just the ticket! A Spring Vegetable and Feta Quiche, Banana Cinnamon Muffins, mimosas, and Oreo Pie for dessert. YUM! You can make the quiche, muffins, and pie ahead of time so no having to wake up early! Check out the recipes in my Make Ahead Meals cookbook HERE :)
Have a great Mother's Day everyone!
Wednesday, May 7, 2014
My parents have a beautiful garden that I've mentioned before. They also set up a scavenger hunt- but they were smart about it and my dad drew pictures of where he needed to go to find the next present. My dad is an artist, so the pictures were quite easy to follow! He had so much fun running all around the yard. The garden and the yard is covered in cool sculptures and landmarks so there were lots of fun places to hide things. His cousin Izzy joined us this year too to help with the hunt :)
After that we had a delicious lunch (hello cheat meal!) and then it was time for an Easter egg hunt in the garden and playing with bubbles. Oh and a photo shoot of course (duh), which Charlie was totally NOT feeling despite looking adorable. C'est la vie!
We had a wonderful Easter, Charlie keeps asking if it's Easter again yet :) We even got some family portraits-- pretty crazy to actually have some photos of the 3 of us together! PS I'm not even 30 yet, being chubby sure makes you look old, jeez!
Tuesday, May 6, 2014
Hi everyone! I'm swinging by today to make sure you are all aware of CF. If you follow my blog it's safe to say you're probably already aware, right? Haha, I kind of hate these "awareness" activities for the millions of different ailments out there. Yes, I'm aware of breast cancer. Yes, I'm aware of domestic violence. yawn. Yes, I'm aware of autism. Yes, I'm aware of Cystic Fibrosis. What they should really be called is "Give Money to My Cause" month, because that's the point of raising awareness in the first place. So let me rephrase myself and ask you to give money to my Cystic Fibrosis cause as a priority over becoming aware. Pretty please.
Why should you part with your hard earned money? Well you certainly don't have to- but I will give you a little breakdown of CF anyways, that way you can say that your awareness was raised but, hey, you'd still rather have your chai latte instead of donating money (What's that? You don't like chai? What's wrong with you?).
CF sucks. It's pretty shitty. CF is caused by a faulty NaCl transporter (depending on your mutation) that creates excess thick and sticky mucus when it doesn't work properly. Think like peanut butter level stickiness. This mucus clogs up the airways making it difficult to breathe and also makes a wonderful breeding ground for bacteria. It also clogs up your digestive system so your body can't digest food. CF is systemic so it affects literally every organ in your body, even though the lungs are what takes most of the credit. But nothing works properly- your kidney, stomach, pancreas, lungs, sinus cavities and reproductive system are all screwed up thanks to all this mucus. CF patients used to pass away by elementary school 60 years ago. Now the projected median life expectancy for a person born today is 37 (please note that's a median, not the average). What's the difference? Science, my friends! The CF community and the CF Foundation both have paid for lots of research into CF and many wonderful medications have come from it. No, it's not cured- but it's a lot more manageable. Still, life isn't easy with CF- it's filled with medications, breathing treatments, hacking, coughing up blood, sinus surgery, stomach aches, feeding tubes, severe reflux, malnutrition, oral/inhaled/and IV antibiotics to fight lung infections, lung transplants (and liver, pancreas, and kidney transplants as well), sterility, pancreatitis, and other equally miserable things. However the people with CF are pretty amazing- they take it in stride and are some of the most positive people I've ever seen. So that's CF. Without donations, CF patients wouldn't be alive today- alive to have jobs, families, and happiness. So the donations go to a great cause for a great group of people that have to struggle with more than I could deal with for a day.
We're incredibly lucky because Charlie's CF hasn't manifested in a serious way yet. CF is progressive, which means it gets worse over time, so this might change as he gets older- but we are off to a great start. I made a list of the medications, specialists, and procedures done to my 3.5 year old child since birth, due only to Cystic Fibrosis. This is to give you some perspective on what a "healthy" CF child goes through, so just imagine how much more difficult it is for the ones who are more sick (and unfortunately there are plenty). If you feel compelled to donate because you're a pretty badass individual you can donate HERE.
Bactrim, Augmentin, Tobramycin (IV and Inhaled), Cefeprime (IV), Azithromycin
Pulmicort, Pulmozyme, Albuterol
Specialists (that we see on a regular basis)
Barium X ray
3 day peripheral IV
PICC line placement (and removal after 3 weeks)
3 Chest X Rays
Allergy and Vitamin screens
Annual blood draws
Countless CF clinic check ups
851 hours spent doing chest physiotherapy in 3.5 years (minimum, this doesn’t include sickness when it doubles from 2 to 4 treatments per day)
3-7 nebulizers per day (it’s too hard to calculate all of them in the past 3.5 years because the schedule rotates)
So there you have it. You are now aware and you may now donate HERE instead of buying your delicious chai latte tomorrow morning. Thanks my friends!
(SN: Photos taken by my talented husband, Robb Cyr, when Charlie was on IV antibiotics a few weeks back)
Saturday, May 3, 2014
Fast forward to now- I have lost the first 15lbs. Still 5lbs away from where I STARTED last year which is super annoying. But I feel good about this anyways, mainly because I've changed my approach and I figured out why I was getting those horrible workout headaches- I'll get to that in a second!
This go around I found the IIFYM (If It Fits Your Macros) approach and I am IN LOVE. Instead of counting calories I count macronutrients; meaning protein, carbohydrates, and fat. IIFYM allows you to eat literally anything you want as long as you meet your macronutrient requirements within 5g. You could eat hamburgers all day if it fits, but I only eat clean food minus a cheat meal or two every week. The main reason I love this program so much, as opposed to counting calories, is that I can eat SO much more. When I counted calories I ate 1200 calories per day. Counting my macros gives me 1500 calories per day- and that number was brought down from 1850, which was initially reccomended! I'm never hungry! And guess what? I work out like a monster and never get headaches anymore. Wanna guess why? It's because I wasn't eating enough before (and def not enough protein)! 1200 calories per day is a pretty run of the mill number for weight loss so it never once occurred to me that I might need to eat more. Now I'm able to eat 25% more food and still lose weight- awesome! If you want to try out the IIFYM calculator to find out your macros it's free and you can find it here. You'll probably have to adjust down because the calories they give off the bat are quite high (I couldn't eat 1850 calories of clean food without feeling sick to my stomach full so I wound up decreasing by 5-7% per week until I hit 1500 calories or so, which is where I'm happy at).
Every Tuesday (this is my "Sunday" since I work weekends) I meal prep for the work week. I plan out 5 breakfasts, 5 lunches, 5 snacks, and 5 dinners that all meet my daily macro requirements. They're all done and prepared so I never have to cook or think twice about what I'm eating for 5 days. The last 2 days of the week I allow a cheat meal or two but keep on track with my other meals.
Here's some examples of my meal plan, I eat the same thing every day for 5 days, but usually it's pretty tasty so it doesn't bother me.
Calories and Macro nutrients: 157g Protein/ 146g Carbohydrates/ 46g fat/ 1574 Calories
Breakfast: Spark Energy Drink during workout, Oats and Whey protein shake, Quest bar
Lunch: whole wheat pasta, tomato sauce, lean ground beef, spinach, zuchinni, mushrooms, low fat mozzarella
Snack: low fat cottage cheese + pineapple chunks
Dinner: Tilapia filets and broccoli
Dessert: Dole Banana Fruit Dippers
Calories and Macro nutrients: 155g Protein/ 137g Carbohydrates/ 44g fat/ 1512 Calories
Breakfast: Spark Energy Drink during workout, Oats and Whey protein shake, Quest bar
Lunch: 1/6th portion of Asian Beef and Broccoli (recipe in my cookbook), brown rice
Snack: Danon Light Greek Yogurt
Dinner: Chicken breast with salsa, guacamole, and brussel sprouts
Dessert: Dole Banana Dippers
Calories and Macro nutrients: 155g Protein/ 137g Carbohydrates/ 44g fat/ 1512 Calories
Breakfast: Spark Energy Drink during workout, Oats and Whey protein shake, Quest Bar
Lunch: 1/6th portion of Pulled Mexican Chicken (recipe in my cookbook), brown rice, low fat cheddar cheese
Snack: Low fat cottage cheese + peaches
Dinner: Pork tenderloin and mashed cauliflower with butter and parmesan cheese
Dessert: 3 Dove Dark Chocolate Promises
That's a lot of food right? Oh boy and do I ever love my Quest bars! I have issues with a lot of fake sugar (specifically sucralose and dextromaltrin), they give my belly the rumbles. The quest bars and the Oats and Whey protein shake are very low in fake sugar and delicious!! Highly recommend to people sensitive like myself!
I also use the IsoBag lunch box (purchase HERE) to bring my meals to work. It is the coolest thing ever. I love how it keeps everything organized and cold, so now I don't have to try and stuff my food into the work refrigerator anymore. I bought the 6 meal bag since I'll be switching to 10 hour shifts soon, but they also have a 3 meal bag for you regular folks out there. It's so nice because even if I miss a snack or meal I know it'll stay cold until I get home.
In addition, I'm working out 3 days on and 1 day off throughout the week. I do Jillian Michaels Body Revolution and throw in some kickboxing DVDs, jogging, or walking on top of it. The last time I tried to do Body Revolution I could only get to Day 3 before I started to get splitting headaches. Now I'm well into Month 2 with no problems or skipped workout days! I love me some Jillian Michaels!
So that's where I'm at now. I have a lot of weight to lose so I started a chart where I get rewarded every 15lbs. Since I've finally met my first goal I got to go to the hairdresser to get my hair done for my reward :) It's been over a year since I got a haircut (yikes!) so she had to lop off quite a bit to keep it healthy. It's weird having it so "short" now- so much easier to wash in the shower haha.
Sorry I'm not sharing any before and after pics, quite honestly the before pics are still pretty embarassing. I'll be happy to share when I hit 30lbs lost, maybe :) I'll try and post updates every 15lbs lost unless you would like to see more examples of my weekly meals, and then I can start posting those- just let me know :) How are you losing? Any tips or wisdom to share?