Summer Fun

As summer now draws to an end, it allows me to reflect back on what we did. For the first time in a long time it seemed like my summer vacation wasn't jam-packed, and it's the first summer in a long time that I didn't do any traveling. We pretty much stayed close to home and enjoyed all the fun things  to do in and around the city. We went to the splash park with friends, the Calgary Corn Maze, Calaway Park, several trips to Heritage Park, weekend visits from Nash's Aunt Barb and and a great two-week visit from Nash's Nana W. who came from Newfoundland.

Now that I'm back to work, people ask, "What did you do this summer?" and while I can say that I had a great summer spending time with my son, what I don't mention is all the "CF-related stuff" that ate up lots of our time. Aside from his daily CF "stuff", 4 days were eaten up by having a Bronchoscopy, an Endoscopy, an ultrasound and a full clinic day. While it may that 4 days isn't very much, it's 4 days too many for a child who should be outside enjoying all the funs things of summer.

For Nash's mere almost two years of life, his life has been ruled by many medications, daily physiotherapy, throat cultures, blood work, ultrasounds and chest x-rays. This summer was the time for the next form of preventive treatment in the way of a Bronchoscopy and Endoscopy which took place at the end of July.

While some clinics do not do these procedure unless problems start to arise, our CF clinic believes in scheduling these procedures before problems become apparent, in order to prevent as much permanent damage as possible. They are primarily looking for bacterial infections that might not show up on a throat culture. While these were not invasive procedures, he did have to be put under and that provided us with some stress not knowing how he would react to having anesthetic, the recovery process (including being hooked up to an IV) and of course, what they might find.

The Bronchoscopy procedure was fairly simple and consisted of a camera being placed down his throat in order to look at his airways and lungs. The actual amount of time the camera was taking pictures was 15 minutes and once done, the Dr. came out and gave us the great news that not only did things look good, they looked great! She actually handed me a color printout of all the images for his "baby book" as she described and I almost laughed. Not something many babies will have in their baby book! This great news was a huge amount of relief especially for me, as I primarily do all the physio and I worry that what I'm doing isn't enough. It's hard as a parent to not stress about what you can't "see". To hear that all was clear, makes me think that all that we are doing is working. This isn't to say that we could to the same amount and he could have an infection, but the fact that there was little to no mucus buildup visible was music to my ears.

Next was the Endoscopy, another 15 minute procedure. Again, there were no signs of problems prior to the procedure but our Gastroenterologist felt that since he was already being put under for the Bronchoscopy, it would be a good time for her to go in and get a good look at his liver, stomach, esophagus, and duodenum (a part of the small intestine). She would also take 8 small biopsies that would be sent off in order to be analyzed. From what she could see, she was also very happy with the results but was on vacation when we went to our clinic visit in Aug. so might get more details of the results at a later time.

The recovery was by far the worst part of the whole experience. When he was walking up, he was still "out of it" and screaming and flailing and trying to rip the IV out of his foot. This was followed by his blood pressure skyrocketing and his oxygen plummeting sending alarms and buzzers off giving me a mild heart attack. It was a long few hours of recovery but finally he was calmed down and medically cleared to go so we happily went home. Our time at the hospital in total for the day was 7 hours so all-and-all, not too bad. At least they were just day surgeries. I asked when he will have to have these procedures done again and was told around the time he is 3 and a half. Until then, I'm hoping he continues to be as healthy as he has been and we can avoid having him put under or needing IV's for at least another year and a half!

Walking the hall waiting to go in for his Bronch/Endo

Before they took him in for his Bronch/Endo

Keep Your Distance

When I talk with some people about Cystic Fibrosis and daycare, it always comes up about how it be great if CF kids could attend the same daycare to ensure that medications are given properly and the caregivers could learn more about CF etc. Well, the one thing that many people don't realize about Cystic Fibrosis is that CF patients shouldn't be around other CF patients. There's too high of a risk of infections being passed from one to another. While Nash is too young to want to play with these other CF kids, it does have an impact on us as parents.

When your child is diagnosed you immediately want to learn more about the disease. While you can go on the internet, so much of what you read is not accurate and so much of it is negative, it really means a lot to be able to talk with other parents who have been through it all. While our experiences many not always be the same, we all have the one thing in common, our child has CF.

I have met, and become friends with, some pretty amazing CF parents. It's just so hard that while we have so much in common, we can't hang out unless it's without the kids. While us moms do try to get together for breakfast, coffee or lunch every once-in-awhile, it has to be without the kidlets. It would be great if we didn't have to worry about our kids being around each other, and if the kids could grow up knowing each other and be able to share their experiences.

The standard rule of thumb is that CF patients should maintain a 3-foot range between them if at an outdoor venue and this is how we are able to do the Great Strides Walk. Everyone tends to stick with their team of friends and family and while Nash is young, he's in his stroller and not running around where he could be hanging out with other CF kids without even knowing. There are approximately 150 children who attend the CF clinic at Alberta Children's Hospital, many of whom attend the walk. It would be impossible to know who all of them are so we just try to do our best to keep him in his bubble and protect him as best as we can. Yet another one of those little things about CF that you may not have been aware of!

Great Strides Walk 2013

The Great Outdoors...or is it?

For me growing up, it was all about being outdoors and being active. Even as a young girl, while I had my Barbie dolls, I also had a sandbox full of dump trucks, climbed trees, played baseball and loved to ride my bike through the mud. When you think about having a boy, you can often think of the fun definition: Boy: A Noise With Dirt On It. While for a mother of a child with Cystic Fibrosis, dirt has a whole new meaning. Dirt means risks. Dirt is part of that "Big Bad Wolf " that I described way back when Nash was 4 months old and we first talked about taking him swimming---Pseudomonas.

Pseudomonas is a bacteria that I have become paranoid about. If/when a CF patient cultures positive for Pseudomonas they are immediately put on TOBI, an inhaled antibiotic to treat the infection. Pseudomonas is the leading cause of lung infection in CF patients and consequent permanent damage to the lungs. These infections are also one of the biggest contributing factors in the possible need of a double-lung transplant later on in life.

Pseudomonas bacteria can be found almost everywhere including: swimming pool, hot tubs, water slides, sinks, ponds, any standing water, plants, leaves, soil, dirt, animals etc. When we first debated taking Nash swimming last year we talked to clinic about our concerns of taking him to a public swimming pool. The doctor looked at the sink in the room and said, "There is more risk of there being Pseudomonas in that sink than there is in a public swimming pool." That's his opinion and while others may not feel the same way, we choose to take Nash swimming and try not to think about that "Big Bad Wolf". The doctor did however advise us against hot tubs and when talking about summer and camping he told us that while the smoke from a campfire may affect him, it also could for any "healthy" person. He did say that as Nash gets older that we should avoid having him play in piles of leaves, raking leaves etc. as it would stir up the Pseudomonas and could cause infection in his lungs.

Enter present day. A couple of weeks ago I took Nash to get photos done for the "Beads of Courage" program. When we arrived at the location and walked to where we were to have the photos done, I almost became paralyzed with fear. There in front of me was a big pile of leaves and a blanket set up and some toys. While the photographer and the Executive Director for Bead of Courage would have no idea of any of this Pseudomonas nonsense, I found myself at a crossroad. Do I just ignore it and go on with the photos as planned or do I explain my concerns about the location? I told myself that we can't have him live in a bubble, and while beyond stressed about the whole situation, I tried to block it out.

The whole way home I thought about how much CF has a hold of us. Something so simple as getting photos done where he is walking through leaves, has me all stressed out. I start thinking that I'm being a "neglectful parent" and how I would feel if he cultured Pseudomonas and I was the one that put him in that situation. I still don't know if I made the right decision and I also know that this is just the tip of the iceberge. He's not even 2 years old and I'm already thinking about all the instances throughout his childhood that I'll be faced with the same dilemma. Do I let him do this or not? And what about when he starts school and I don't have as much control over what he does throughout the day?! Oh man.

So for those who have children who can run freely through the leaves, roll around in them, go in a pool or hot tub without thinking twice, think about how something so simple can be so potentially harmful for someone who has Cystic Fibrosis. This is just a glimpse of how CF affects our lives.

Heavy Heart

Today I have a heavy heart. Today was my due date. I knew it was coming and some knew, others did not. I woke up today and literally felt sick to my stomach. People ask if we want more children and yes, of course I "want" more but the long and short of it is that we will not and it's because of Cystic Fibrosis.

There came a time a couple of months ago where the inevitable happened. Everyone around me became pregnant with their second. I knew it would be tough but when it happened, although I was excited for my friends, it was like a jab to the heart each time. It seemed as thought they all got pregnant at the same time (which they did!) and I started having dreams that people close to us were pregnant. I would wake up and write them asking if they had something to tell us!

I got over it and I know that we have made the right decision for our family. I know that we are very lucky to have had a child at all, others struggle every day to get pregnant, but I guess for me I just always imagined having more then one child so the fact that we "can" have more but won't because of Cystic Fibrosis is the hard part.

People always ask if we plan on having more children and my response is this, if we were to have another child, the chances of that child having CF are the same as they were for Nash. A 25% chance. But the reality is, it's not just about the chances of that child having CF or not. It's about Nash. We want to give our 100% to Nash. It's our family decision. I think about if I were to be having another child, as I was supposed to around now, and I don't know how we would have done it. I know that it's all about scheduling and asking for help but we don't have any family in the city. My husband owns his own business that is ridiculously busy, we have two dogs and a child that requires daily physiotherapy and meds, being diligent about his diet, doctors appointments, clinic visits....I know that we could manage it if we had to but I just don't want to feel like I'm taking any time away from Nash. I want to give him 100%.

So that's that. Today will suck but tomorrow I'll be fine. We have an amazing little boy and I can look forward to all the things we can do for him and with him. And to all my friends who are pregnant right now, you know that I'm beyond happy for you, I'm just a little jealous:)

Nash's Beads of Courage

I posted briefly about Nash's Beads of Courage back in the Fall when he first received them but with thinking about all that he's been through this past year I thought I would touch on it again. The Beads of Courage program was introduced to the Alberta Children's Hospital in 2012 with CF Clinic being the first to take part. Beads of Courage is a way for children to record and tell their story through beads. Each time we go to clinic Nash receives new beads. Here is a link to "Beads of Courage Canada" to learn more about the program.

Link to "Beads of Courage Canada"

This past week I was interviewed by a writer hired by CF Canada who is doing a fundraising letter featuring our family. This letter will be mailed out across Canada with the hope of raising awareness and funds for Cystic Fibrosis Canada. After being interviewed it really brought me back to when he was first diagnosed right up until now and all that he's been through. Clinic visits, throat cultures, stool analysis, ultrasounds, chest x-rays, blood-work, needles, needles and more needles. Add that to the numerous daily medications and hours of physiotherapy that will only increase as he gets older. Did I mention he's not even 2! This is what the Beads of Courage program aims at highlighting; all that he's been through, and will continue to go through, as the years go on. Each bead represents one part of his journey with Cystic Fibrosis. 

We feel fortunate that Nash has been fairly healthy with only numerous colds and rounds and rounds of antibiotics. He has not been admitted and his only "procedure" coming up is a preventative one in the way of a Bronchoscopy. His Bronchoscopy will take place this summer, and while only a 15-minute procedure, will he will need to be put out. 

We went over the whole process this week with our Respirologist and she was able to show me a bronchoscopy camera that they had hooked up to a computer and went through step-by-step the entire procedure. When asked whether I was ok with doing it I replied by saying that if they felt that the benefits outweighed the risks and they felt it necessary then we were ok with doing it. She explained that some clinics do them more often, some not at all unless there is a problem and that as a CF clinic, they are middle of the road with their approach. In our eyes, we would rather know if there is some form of bacteria in his lungs causing damage than not, so we will be going through with it. 

Nash's Beads of Courage - April 2013

Wrapping for a Cure

I have joined the committee for the "Wrapping for a Cure" event held each year in Calgary and we are already looking ahead to next Christmas! I know that everyone has their causes for fundraising and which charities they chose to support but for the rest of my days, I'll be fundraising for CF. I think it would be different if it was something that I was dealing with as an adult, but when it's your child that has a "terminal illness" (as it is deemed), things are different and you want to do everything you can to help find a cure. In one year I have already seen the advances in treatments for CF and feel that money raised truly is going toward a good cause. We will once again be doing the "Great Strides Walk" here in Calgary and we'll be fundraising for that, but "Wrapping for a Cure" is more about having friends sign up to wrap, taking their gifts to be wrapped, or helping us find corporate sponsorship for the event.

This past December I signed up for some shifts for the event, "Wrapping for a Cure". Being that we were going away for Christmas, and that I was only available to do it on weekends, I was only able to do 2 shifts, one at Market Mall and one at North Hill Centre. I had heard of this event in the past but obviously now with having a child with Cystic Fibrosis it takes on a whole new meaning. When I put it out there to friends to see who would like to wrap with me I was overwhelmed by the offers. Thanks to Meagan and Amanda who found child care for the day to come wrap gifts with me! I hope that by spreading awareness of this event that more friends in the Calgary area will sign up next year to wrap gifts at either of the two locations. Don't worry, I'll let you know when the sign-ups begin!

Our "Poster Child"

About the event:

"Wrapping for a Cure” is an event run by Cystic Fibrosis Canada, Calgary and Southern Alberta Chapter. Our committee consists of mothers of children with cystic fibrosis who are committed to raising funds towards a cure. It started over 24 years ago when a grandmother of a child with cystic fibrosis came up with an idea to raise money for CF. She set up a wrapping booth at the downtown Eaton's centre and called it "The Looney Wrap". Over the years, hundreds of volunteers have wrapped gifts at different Calgary locations, including our current locations of Market Mall and North Hill Centre, in exchange for a donation to Cystic Fibrosis Canada.

The event runs from December 1st until Dec 24th at Market Mall and North Hill Centre. Volunteers wrap customer’s gifts in exchange for a donation of their choice with all proceeds going toward research and clinic support in our area. In 2012 our event raised $40,000, and we are hoping to beat that this coming December. While Market Mall and North Hill Centre have been instrumental in our continued growth and success, we would like to add additional sources of revenue by extending sponsorship opportunities to corporations and individuals in order to help us achieve, or beat our goal!

If you know of a corporation that may want to support "Wrapping for a Cure" please let me know! We are looking for companies that will sponsor a "shift" and match the proceeds raised on that shift (or day) and proper signage will be displayed recognizing their company.

Just as one thing gets easier

Just as one thing gets easier, another thing gets harder. Always the way right?! Well with us, the physio has gotten a bit easier. While it's still hard to fit it all in, Nash doesn't fight us on it as much. When we flip him on his side he still blocks us lots with his arms and hands but he's not screaming and wiggling away.

The hard part now is eating, or lack thereof! We had been so spoiled in regards to what a great eater he was. He would eat everything we gave him, and by the handfuls. We would joke about how we could never imagine him becoming a vegetarian as he loved meat so much. He would eat fish, all different meats and every kind of fruit and vegetable out there. Well, now...not so much! It started when we flew to Newfoundland for Christmas. We assumed that it was due to all the changes. The long hours of travelling, the time difference, being in a new environment and he also had a bit of a cold. We had hoped that things would go back to normal once we returned home. Well, it's been another week and a half and it's no better. He'll eat all fruit, his yogurt and take bottles but very little else. 

With Cystic Fibrosis weight gain and maintaining it is a big deal. CF patients have a diet that only others could dream of. Add salted butter to everything, load it up with high calorie/high fat ingredients and eat like a pig! Haha, that's how P.J. and I describe it. There still needs to be balance obviously but my child will eat much differently than one that does not have CF. You'll see me loading on the salt, adding lots of butter, sour cream, and our new favourite Hollandaise Sauce (has 1/2 cup of butter in it!) 

How Does CF Affect Nutrition? (Taken from a CF website called "CF Chef")

Link to "CF Chef" Website

Most people who have CF also have a condition known as exocrine pancreatic insufficiency (EPI), which means that the important digestive enzymes in the pancreas cannot reach the intestines to aid in the digestion of important nutrients such as fat, carbohydrates and protein. If these nutrients are not digested, all of the vitamins and minerals that are in them will not be absorbed into the body. In order for people who have EPI due to CF to digest and absorb the nutrients in food, they need to take supplemental pancreatic enzymes.

To get enough calories to promote normal weight gain and growth, individuals with CF may need to consume up to two times as many calories as a person without the disease. Also, to be sure that the correct amounts of vitamins are available, a multivitamin designed for people who have CF is usually prescribed.

Even though people who have CF need extra calories, this does not mean people with CF can eat foods like french fries covered in cheese as their only food at every meal! They need to balance food intake at meals and snacks to stay on track with weight gain, growth and overall healthy nutrition.

So, taking all of that into consideration this phase of not eating is it bit more stressful to me than someone who has a child without CF. We have worked so hard on offering a variety of foods and hoping that he wouldn't be a picky eater and at one point this brought us to seeing him go from less than the 10th percentile in weight to the 90th! The last clinic visit in December he was in the 70th and I just worry that we'll see another drop when we go in February. I notice a difference in his belly size and the way clothes are fitting but P.J. just thinks it's due to an increase in his height and the laps he does running around our house with his walker. 

Regardless, spending an hour to an hour-and-a-half preparing a meal only to have Nash throw it on the floor the second it hits his tray and then proceed to cry is enough for me to want to walk away and cry myself. I try not to show any emotion but then I'm stuck standing then thinking, now what? I am really hoping that this is a phase and that it passes quickly! 

Last month when he used to love eating! 

A day in the life...

So back when Nash was 4 months old I did a post about what a typical day living with CF was like so I thought I would do an update. Surprisingly, not a whole lot has changed in regards to his medications and his overall health. We are forever thankful for our CF team for always being on top of things and feel that we have been lucky thus far with his health. He has had cold after cold but we know that this would be the case for most children entering daycare for the first time.

Medications
In regards to medications, Nash takes 3 enzymes per meal, 1-2 for snacks. These enzymes are pancreatic enzymes and do what our pancreas does, which his cannot. He needs to take these every time he has something to eat or drink except for things like fruit, or fruit juice, because there is no fat to break down. He also takes Ranitidine twice a day. In the beginning he took it for reflux, but now he continues to take it in order to help the enzymes do their job. He takes Urso (Ursodiol) for his liver, which has only been since about the end of August. This is common for many CF patients and works as a preventative measure for his liver. He takes this twice a day. AquaDeks is the bright orange multivitamin/mineral supplement and his takes this once a day. We add extra table salt to all of Nash's food. I've gotten a few strange looks in public with this one! CF patients sweat out way more salt than us. That's why they do what's called a "Sweat Test" when confirming CF. It measures the amount of salt.

To the left of the picture are things that are not taken daily. The bottles are an antibiotic that Nash takes when he has a bad cough that won't go away. Since July he has been on this three times. When Nash gets a cold it's not like a typical child getting a cold, it holds on for a long time. He usually gets a bad cough and then I begin to panic. We wait 5-7 days of the cold taking its course and then we call/email clinic and get their advice. We are most worried about a viral infection becoming bacterial. Bacterial infections can cause long-term damage his lungs and depending on how much damage is done over the years, often leads to needing a lung, or double lung, transplant. Our clinic tends to be on the more aggressive side of treatment in order to prevent these bacterial infections from getting into the lungs.

The ventolin inhaler is used periodically when he is sick. Often times children with CF will also have asthma but so far, so good.

Physio
I've written a lot about physio in the past, and our struggles with it, but basically what we do is called "Manual Postural Drainage". By moving Nash into different positions we are able to "beat" on his lungs, haha.  We use a cupped hand position and try to do approximately an hour each day. This is now tough being that we both are working full-time. We have to wake Nash up early in order to get some done in the morning as he's too overtired and cranky to handle an hour in the evening. P.J. does about 15 mins in the morning and then when I get home from work I try to do another 45 minutes. To squeeze this in after work, supper, bath and bed by 7:30-8:00 is a challenge and there are many days where I envy those who can come home from work and have play time and enjoy their evenings. I feel like a lot of my time with him is beating on him and giving him medications:(

Over the holidays a family member did make a great point though, that's an hour of physical contact he is getting with us and that can be pretty special bonding time. When he is calm, I definitely feel that way. When he fights it, I'm pinning him down and he's screaming, I don't feel like we are bonding as much, haha. We just keep hoping that as he gets older and we can explain it to him, that hopefully it won't be so hard.

So that's a quick update.