Tuesday, May 27, 2014

Causes: Cystic Fibrosis Awareness Month.

A friend of mine, Taryn, came to me saying a relative may be interested in sharing their family's Cystic Fibrosis story as part of my Causes series.  My friend connected me with Tami and she graciously shared Emily's story with me and now with all of you.  I love Emily's awareness and responsibility in managing her Cystic Fibrosis, but I wish it weren't necessary.  I couldn't agree more with Tami's question, "Wouldn’t be wonderful if her children got to live in a world where people are only aware of CF as a disease that used to be?"

May is Cystic Fibrosis awareness month. 

My daughter, Emily, has Cystic Fibrosis. 

Diagnosed just a precious few days after birth, she has never, not been aware of CF.  She does not know life without taking multiple medications every day and spending up to two hours every day wearing a vibrating vest to help clear mucus from her lungs.  She is as aware of CF as she is of her own breathing, her own thoughts, her own being.

Today, as we participated in Great Strides, the Cystic Fibrosis Foundation’s biggest fundraiser at Milwaukee’s lakefront, I caught a glimmer of how deep her connection of self to CF is.  The Emcee of the event said something like “Let’s find a cure for CF” and Emily, in a quiet moment between just the two of us looked up and said, “No.”  I wasn’t surprised. She has a tendency to be Little Miss Contrary.  But I asked, “Wouldn’t you like a world without enzymes and your vest every day?”  “Yes,” she replied, “but without CF, I’m not me!”

At age 8, Emily’s awareness of her disease is changing.  She has what some people might find a surprising amount of knowledge about CF.  She can give a pretty good, age appropriate explanation of why she has CF and her sister doesn’t.  She understands that in order for a person to get CF, they have to have received the “Bad” CF gene from their mom and their dad.  (“Bad” is her word in this case.  I have always been very careful to use “Changed” when talking about the gene mutation to my girls, to try to avoid a negative association.  But, go figure, her brain translated it to “Bad” anyway.) She knows that she got two CF genes and her sister may have gotten just one, or none at all.

Emily can tell you that CF causes her body to make too much mucus.  She doesn’t understand, yet, that it is a defect in the movement of sodium and chloride (salt) through the cells that causes the mucus production.  She does know, however, that mucus is where infections like to grow, she must not only wear her vest to break up the mucus, she also needs to inhale two medications through a nebulizer, and use an inhaler, just like Dad does when his asthma and allergies make it hard for him to breathe.  She also knows that even though she never misses a treatment, infections can still grow.  Catching a common cold can bring on a “pulmonary exacerbation” (words she does not know) and land her in the hospital for a “tune up” (words she does know).  Tune ups are 2-3 week hospital stays during which Emily gets IV antibiotics through a PICC line placed in her arm, and respiratory treatments four times daily.  During her first grade year at school, she did this twice.  Her doctors gave her a special 4-hour pass so that she could go to school to sing in her Christmas program, but, she missed a lot of fun End Of The Year activities during  her next stay in May/June. 

Emily knows that she MUST take her digestive enzymes whenever she eats.  At school this year, her teacher simply provides them each day in a small pill case for Emily to keep in her desk.  Emily is in charge of knowing how many she needs (it varies with fat content of the food, but we stick to a general “2 with snack, 4 with meal” rule, with a few notable exceptions.) The enzymes are a necessary part of meal time because the same salt imbalance that cause too much mucus in the lungs causes too little enzyme production in the pancreas.  Emily can explain that the red and white pills she pops down four at a time do the job that the rest of our bodies do, while we aren’t even aware.  In addition to her enzymes, there is a small buffet of pills that she takes at dinner time.  There’s prevacid to combat reflux (a common malady in people with CF, due to incomplete digestion); a special fat soluable vitamin ABDEK tablet because her body cannot absorb these nutrients from food; an extra vitamin D tablet because her annual blood work always shows a deficiency; a probiotic to keep her intestinal tract healthy because God-forbid we have to live the C.diff nightmare again, and azithromycin on Mondays, Wednesdays and Fridays which she takes as an anti- inflammatory agent.  Emily no longer needs to be asked to take her pills.  She just gets the container out of the pantry and does what she needs to do.  She just told me that she’d like a “pill schedule box” for her birthday so that she can load it up on Sunday with everything she needs for the week instead of opening each individual bottle every day.  Some birthday present!

About 4-6 times a year, this daily regimen is joined by oral antibiotics, which she takes in the morning and evening.  They cannot be taken with some of her other medications.   We start a three week course of antibiotics as soon as we start to hear an increased cough or see other signs of a looming exacerbation.  It is a necessary tool in the fight to stay out of the hospital.  Unfortunately, spending so much time on antibiotics can wreak havoc with the gut.  C. diff, mentioned in the last paragraph is an overgrowth of bad bacteria in the gut, made possible by the killing off (from antibiotic use) of the good bacteria that normally keeps it in check.  C. diff is, well, for us it was hell.  It made her a very, very sick baby for a pretty long time.  We had a hospital stay when she was 15 months to try and get rid of it, but it wasn’t an easy fix.   

There are other things Emily knows about her CF.  Like how her feeding tube, which she got at 18 months and still has in her tummy, helps her get extra calories while she sleeps.   Even with the help of digestive enzymes, a CF patient’s body has a hard time getting the necessary calories from a normal diet, and need to supplement.  Emily is encouraged by her doctors to eat a high fat diet.  She does, but the supplement through the tube has been a God-send.  She is absolutely a normal height and weight, and her body has the energy to run, play, do karate and fight most infections.  She can also explain why, even though she hates them, nightly sinus rinses are a necessity.  She has had several sinus surgeries to clean out mucus and remove nasal polyps, commonly found in CF patients.   

It’s a given that Emily is aware of and knowledgeable about her disease.  She hasn’t been given another choice.  None of us has.  CF is a family thing.  We all take turns sitting with Emily while she shakes in her vest; her big sister sometimes carries enzymes in her purse when we go out; we all take part in fundraising events like Great Strides and Climb for a Cure at the US Bank Building.  I have found that connecting with other CF parents (just the parents, though as patients are forbidden by infection control policies from having close contact with each other) helps me to cope with the stress inherent in any chronic disease, so I am active in a Parent Advisory Board for the CF Clinic at Children’s Hospital, and I volunteer at several events each year.

But, we try and make sure that our lives are not ONLY about CF.  Emily does all the stuff that any other 8 year old girl does.  We’ve even begun to navigate the world of sleepovers…not an easy task when you have to take along a couple large pieces of medical equipment and a host of pills.  She loves to play outside with the neighbors and she absolutely LOVES her karate class.  Karate has captured her heart to the point that she re-named our Great Strides team this year.  We became Emi’s Ninjas, and she designed our team t-shirt!  Most of the time, I feel like we do a good job helping her be a balanced, well rounded kid, not just a kid with CF.  When she expresses worry about someday not having CF, though, I have to wonder.  Have we let her become too aware?  Have we pushed her into seeing herself only as a patient?  Does CF comprise too much of her life?

I hope that in time she will be able to understand that SHE will not cease to exist if we should be so lucky as to someday live in a world where CF does not.  I want her to be able to look back on these years and see how CF has made her who she is becoming.  She is responsible, passionate, determined and empathetic because of CF.  But these qualities are only part of what make her the person that we love so dearly.   

There is no cure for Cystic Fibrosis.  Eventually, all CF patients succumb to the mucus that drowns their lungs and other organs, weakened by the stress of not receiving enough oxygen or nutrients begin to fail.  Currently the median life expectancy is 42 years.  It is our dearest hope that a cure will be found long before Emily reaches that point.  Wouldn’t be wonderful if her children got to live in a world where people are only aware of CF as a disease that used to be?

To donate to the Cystic Fibrosis Foundation visit: www.fightcf.cff.com

To read the other posts in this series, click here.

Sunday, May 11, 2014

Causes: Food Allergy Awareness Week.

Today marks the start of Food Allergy Awareness Week.  Myra's FPIES has brought us frustration, tears, sleepless nights, many trips to multiple doctors, and a variety of other things.  Fortunately, it has also taught us a lot and introduced us to some very wonderful people, people like Fallon Schultz.  Fallon is the Founder and Chair of the International Association for Food Protein Enterocolitis (FPIES) and has been such a great resource to our family and many others.  Thank you, Fallon, for this contribution to my Causes series and to the FPIES community as a whole.

Working to Make the Unknown Known: Fallon Schultz and IAFFPE

As the mother of a child with Food Protein-Induced Enterocolitis Syndrome (FPIES), I truly understand the joys and immense challenges of raising a child with this rare and poorly understood condition. My baby is now 5 years old and attending kindergarten; he lives a full and happy life despite the hurdles that FPIES still presents.
FPIES can be a very frightening and confusing condition to deal with, especially prior to diagnosis, as a child can experience severe and unexplained reactions to common first foods and/or formula. FPIES is a serious non-IgE reaction in the gastrointestinal system. Unlike most food allergies that produce immediate reactions such as swelling and hives, FPIES reactions are characterized by delayed, profuse vomiting, lethargy, diarrhea, and even shock. The most common triggers are milk and soy, but any food can cause an FPIES reaction. At this time, little is known about FPIES, and few doctors are able to recognize and diagnose the syndrome. Unlike common food allergies, standard skin and blood testing are routinely negative in FPIES patients. There is currently no cure or standardized treatment. 

As Founder and Chair of the International Association for Food Protein Enterocolitis (www.fpies.org), a nonprofit, volunteer-run organization for families raising children with FPIES, I want parents to know that they are not alone on this journey. I want them to know that there is a world of support and resources waiting for them. I also want them to know that we are working diligently on their behalf to educate physicians worldwide, to develop tools that will ease the day-to-day burdens parents face, and to fund research that will lead to better diagnosis and treatment options.

IAFFPE started in a hospital room in the hours and days following my son’s FPIES diagnosis. Like many other FPIES families, we had been through a long, worrisome struggle just to get a diagnosis. I was scared, concerned for my son and didn’t know where to turn. I was shocked to learn that there were no formal channels of support or information available to FPIES families. IAFFPE was launched in September 2011, and in a few short years, we have taken the lead on a number of initiatives that are bringing real, impactful change to the FPIES community. Here are a few recent highlights: 

·         Last June, we received news that FPIES finally has an official diagnosis code: K52.21. This was a major initiative for IAFFPE, and when this code is enacted it will impact our knowledge, awareness, research, and funding for this condition.

·         IAFFPE is the only organization actively funding FPIES research. In 2013, we funded a new CHOP study that has helped shape our understanding of this condition.

·         We have worked to put FPIES in the spotlight with media coverage from ABCNews and Good Morning America.

·         Last fall, we presented our first national FPIES Education Conference in Philadelphia. IAFFPE is planning more opportunities to bring our community together and offer access to leading FPIES experts.

·         Our Medical Advisory Board has teamed up with other leading FPIES researchers to develop the first consensus guidelines for FPIES. The guidelines will provide a course of action for diagnostic and treatment protocols, research needs, and daily management of the condition.

Every day, we’re in touch with families who live with FPIES. They are resilient and resourceful; their courage and determination is a constant source of inspiration. But there is no denying that managing this condition can be difficult, demanding and isolating. FPIES adds an extra level of stress to our daily lives, from the financial burdens to meal preparation to the impact on social activities and relationships. It’s important to remind ourselves of the impact that this stress can have. We’ve shared on our blog some tips to help manage the fear and anxiety we often feel as parents of a child with FPIES.

I encourage families to reach out to us when they are getting started on their FPIES journey. IAFFPE exists to help families feel less alone and improve the quality of life for both parent and child. For those parents who have been in the trenches managing FPIES for a while, we welcome you to get involved and share what you know with others who are new to FPIES. For those who have time and talents to share, we encourage you to get involved in IAFFPE with volunteer or leadership opportunities.

Thanks to Ali @ bettertogether for this opportunity to share IAFFPE’s efforts and help raise FPIES awareness. I invite to you follow us on Facebook and Twitter and visit our website to learn more about FPIES and find out how you can help. 

Click here to see a list of the other posts in this series.

Wednesday, May 7, 2014

Causes: Nurses Week.

It's nurses week and I'm so glad I easily found a willing author for this post as I have had many wonderful nurses over the years!  Nurses can definitely make or break a medical experience for the patient and loved ones.  I love Chelsea's perspective on the missed time from family and the importance and meaning of her job. Thanks to Chelsea for writing this Causes series post and Happy Nurses Week!

Name Chelsea
Current position: RN. nurse supervisor: at a care care center through Fairview Health Sevices:
Years of nursing.   Offta… years in health care: 10 (as soon as I turned 18 I took my first job in the health care field). Worked years as a licensed nurse: 8.

I’ll address the question I get most often first: why did I become a nurse?.  My mom is a nurse, half my family is in healthcare-it was what I knew and what I knew I could be good at.  And, I'm a practical gal- I knew I'd always have a job, make decent wages and the schooling wouldn’t put me in debt until my 40’s.  I don’t have a fabulous story of “the one nurse who changed my life” or “ the dream to change peoples future”. Sorry, I’ve got nothing.  

The question I think is more important to ask nurses is “why did you STAY a nurse”. Nursing school does not prepare you for the job- you can memorize labs and vitals and procedures but true nursing is so much more. It's LONG hours and unpredictable patients and even more unpredictable families, it's mandatory overtime, holidays, weekends, stress, back pain, staff turn over. It's seeing people at their worst while having to be your best- how many patients think back to the nurse they screamed at for more pain meds- you won’t remember us, but we remember you. Nursing can be completely physically and emotionally draining- and a lot of nurses then go home to care for young children and their families- how do you cope when there is no limit to how much of yourself you give.  I have been through every stage of work burn out- more than once. My last jobs 1st day orientation was to watch a video on work burn out to help nurses identify the signs more quickly- it's inevitable and it's awful. This is a job where no matter how how you try you can't leave work at the door.

I have seen far too many nurse quit in the first year, sometimes first 6 months. For most, I feel nursing is a complete shock when you start your first job. 
To say yes to “ can you work every other holiday is one thing” but how many  Christmas Eves away from your family do you take? As I become older and start thinking of starting my own family I am more aware of the sacrifice of parents. Just last Halloween I was working the evening shift and watched as husbands, grandparents, brought the nurses’ children into my work so their moms could see them in their costumes and I thought “someday my husband will be doing that”. And I pay more notice to the the nurses sharing pictures they get on their phones of their children Christmas morning before they start their am med pass. My own fiancĂ© knows all too well of the 12am phone call on New Year's Eve as I spend another ball drop in my scrubs.

And yet, (besides right now) for the ones who stick the job out you don’t hear us complain. One of my favorite things about nurses is the mindset that “we are all in this together.” How can you complain about missing a girls night out when your co-nurse may be missing her child's 1st step. You learn that being upset about having to work a mandatory extra shift will not make that shift go by quicker. Our patients lives don’t stop for weekends or nights- nether does our job.  We do it for the passion of taking care of others; a passion they may fade or waver slightly, but is always present in every nurse.

I currently and have always worked  in geriatrics or long term care. Its not the most prestigious, fast paced field but its without a doubt where I belong. It can be changing -. everything you think an 80year + person couldn’t do I can firmly say, “ oh yes they can!” I always say if I can mentally survive a double shift working in a locked dementia ward then I can survive anything. And it can be wonderful- to be a part of someone's livf every day- to meet their families, to hear their stories, to become the familiar face they know. 
 Many years ago I had a nurse mentor say to me:
     "When people are born that nurse or doctor will look at the clock and state their time of birth. In sense that is when their life book begins. Their pages fill with stories, memories, and milestones. And when all is said and done, when the book is almost full, they come here [a long term care center] and we get to help them fill the last pages of their book. We are there on the last page- and we have the power to make that one last positive story. Wither it be making sure they are pain free, calling in a beloved family member to be with them or maybe ourselves taking the time to be there with them. And we call the time of death. We are the last sentence of their book."

My job is an honor. I am blessed to meet every patient who comes my way who trusts me with their book. To trust I will give them the care they deserve.  


Monday, May 5, 2014

Causes: National Pet Month.

May is National Pet Month, and while any pet cab be a great addition to a family, of course I am biased towards dogs.  Chrisy is a good friend and was one of my roommates in college.  I asked her to write this post because I know how much she loves her dogs and I love that they were rescues.  Babe and Izzy are part of her family, just as Rowdy is part of ours.  We were so excited to get Rowdy and he was (still is!) so darn sweet and adorable, we fell for him right away.  He kept me company while Trevor was in Kuwait and snuggled up with me during some tough times.  He keeps me active when I'm feeling lazy.  I know what it's like to have a very special furry friend in your life, I'm so glad Babe and Izzy wound up with Chrisy and Craig.

Growing up my family always had a dog, so when I bought my house in 2009, I knew I wanted one of my own.  I waited a couple months so I could get used to the house then started researching different breeds. I knew I wanted a bigger sized dog, and that I also wanted to adopt/rescue it. After a few weeks of checking different rescue websites, I saw a dog that I wanted to go meet. She was a 1 year old brindle Boxer, and little did I know she would immediately steal my heart.  Upon arriving (very early) to the adoption event, the volunteers took all my information and prepared the adoption paperwork.  My Babe arrived about an hour or so later and was in pretty rough shape.  The dog that I meet had 6 pink stitches in each eye, was so skinny you could count every rib and you could see her spine. She belonged to someone that had her chained up outside, day in and day out, finally taken away and put up for adoption after a good Samaritan neighbor called about her.  We went outside and sat down to see if we “clicked”, she looked at me with her big sad brown eyes and it was all over, but to seal the deal she sat down right on my lap. The day I took her home, Babe weighed in at 40 lbs, today she is a very healthy happy 60 lbs. My life changed completely July 4th 2009, Babe is the best dog I could have ever asked for. She is so funny, and just loves life, dogs really do teach their humans how to appreciate the little things, like a walk or a squirrel in the front yard. 

In January 2013 my FiancĂ© and I made the decision to rescue another pup, her name is Izzy, a fawn Boxer mix. Like her sister, Izzy was in very rough shape when we got her.  She came to MN from Kentucky and we believe she was a puppy mill dog.  She had Pancreatitis, worms, issues with certain foods, and was also so skinny you could see her ribs and spine. We spent a lot of time at the vet those first two months trying to figure out what her issues were and how to make her feel better. She is now on a specialized diet and is a happy healthy girl.  Izzy is full of spunk and just loves to run, she is very interested in the squirrels and playing with her sister, Babe.

The two dogs are inseparable, and it is so fun watching them play with each other.  It melts your heart when you walk into the living room to find them snuggling on the couch together.  Some people may find it strange but our two dogs are our kids.  I couldn’t imagine my life without them, they just bring so much joy, I really do laugh at them every single day. It is the best feeling in the world to walk in after a long day of work to two wiggling butts, they get so excited when you come home. I’ve read a quote before that I love and think of often “I hope to be the kind of person my dog thinks I am”. This couldn’t be a truer statement, no matter what’s going on in my world, my dogs think I am wonderful and show me that every day.

Click here to see a list of the other posts in this series.

Saturday, May 3, 2014

Is it Spring yet?

Random post since I've failed to post about our Spring so far...

Bike rides (rare...snow photos to follow)

Wagon rides and crazy faces
Swimming lessons

 Hanging out with friends (who traveled across the country to visit!)
Target practice

Checking out Papa's farm

Fun around the house on cold rainy/snowy days
Mike and Kyra's wedding (first of MANY this year!)

Studying after Myra's first dental checkup (officially)
Follow up ophthalmology appointment.  All is well, optic nerve looks good and no need for glasses yet (there was a possibility). Dilated toddlers are silly.

Sun protection - we'll need it some day!
 Walks when we can

ECFE's Family Festival (these pictures don't do it justice - awesome event!)

Two play dates with friends from our very first ECFE class (and Grandpa!)


Clearly I need to post more often.  I didn't realize how busy we have been!
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