Posts Tagged ‘PHS’

Guest Post: Everything Will Be Okay

Tuesday, April 15th, 2014

Angie is a professional copywriter and single mom to a 9-year old daughter, Ruby. Ruby loves macaroni and cheese, is obsessed with Elmo and she has the ability to light up a room with her breathtaking smile. Ruby was born with a rare genetic constellation of microcephaly, micropthalmia and apple-peel atresia. At only 30 precious pounds and 3.5 feet tall, her peanut size makes her adorable in each and every way. But don’t let her small size fool you — this girl is fearless and strong.

Angie is not really interested so much in genetic syndromes, growth charts or doctor’s predictions. Instead, she gives Ruby lots of love, plus ample opportunities to learn – and most importantly, she has heaps of faith. She has found these qualities to be the best predictor of Ruby’s success.  You can read about their adventures where she blogs at www.raregemsblog.com

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“She stood in the storm and when the wind did not blow her way, she adjusted her sails.” – Elizabeth Edwards

 

IMG_3581As parents of medically-complex children, fear of the unknown is something we must grapple with on a daily basis. What if my child doesn’t hit that milestone? What if the PCA/nurse calls in sick? What if I’m not doing enough for my child?

Fearing the Unknown

When my daughter was diagnosed with an array of congenital abnormalities in utero, fear of the unknown hit me smack dab in the face. We didn’t know if she would live to take her first breath, and if she did, we had no idea what kinds of challenges she would face throughout her life.

Following this scary diagnosis, I would lie in bed every night with a loop of frightening images about my daughter’s future playing in my head. I surfed the Internet endlessly looking for positive outcomes and found none. My fears were eating me up inside. I so badly wanted to enjoy my pregnancy and look forward to my daughter’s birth, but I couldn’t see beyond all the bad things that were happening.

One day after particularly bad news at the doctor, I cried for what felt like hours. As I wept, I realized that there was absolutely nothing that I could do to change the outcome – and worrying was only going to make it harder.

Choosing Faith

In that moment, I chose to let go of my need to worry about the outcome and instead repeated to myself over and over, “Everything will be okay.” Choosing faith over fear was a conscious decision that I had to revisit on a moment-to-moment basis, but when I let my fears slip away, magical things started to happen. I not only felt much more positive and prepared to tackle whatever challenges came my way, my daughter’s prognosis actually got better. Ultrasounds revealed that many of the things that had troubled us were not as bad as they originally seemed.

IMG_3550On November 11, 2004, my daughter was born seven weeks early, but to everyone’s surprise, she was pink and she was breathing on her own. Over the past nine years, she’s surpassed every single expectation that the doctors had for her. I firmly believe that if I had stayed in that space of fear and worry that she would not have done as well as she has.

Don’t get me wrong – there are times when I find myself worrying about her future. But I always go back to the same mantra I used years ago: “Everything will be okay.” As I repeat those four simple words to myself, I feel peace roll over me.

Keeping the Worry Out

Over the years, I’ve found some other practices that help me when I start to feel fear and worry creeping back into my life. I hope they help you as much as they’ve helped me.

    • Use positive affirmations. Instead of focusing on what you don’t want, why not focus on what you do want? Using positive affirmations such as, “My child is healthy and thriving,” or “My nurses are helpful and capable,” can help shift your mindset from a place of fear to one of possibility.
    • Meditate every day. Taking a few minutes to clear your mind can go a long way toward calming your nerves, and in that quiet space, you may even think of new solutions to old problems. Even just a single long breath in and out with your eyes closed can bring you much needed clarity in stressful situations.
    • Adopt an attitude of gratitude. Taking the time to acknowledge all of the good things in your life can quickly shift a worrisome mind. Even when things are stressful, there are always things to be grateful for such as the sun on your face, a hug from your child or a smile from a stranger. Focus on the good and let the negative fade away, if only for a moment.

 To learn more my daughter Ruby and me, please visit my blog at raregemsblog.com.

Be The Match: Joining the Marrow Registry

Friday, April 11th, 2014

It’s something most people don’t think about until they personally know someone who has needed it – but families who have been through it can tell you, marrow transplants can mean new life for someone diagnosed with life-threatening blood cancers. Ann, a Health Unit Coordinator at PHS, will be the first to tell you how life changing it was to find a marrow donor for her son, Caleb.

Caleb’s Story

Caleb2“Caleb was diagnosed with Familial Hemophagocytic Lymphohistiocytosis when he was 19 months old, after 10 long months of unexplained fevers and other symptoms. On the day he was diagnosed, we were told that his only chance of survival was a bone marrow transplant and that it needed to happen very quickly.

“Our daughter (who had just turned 5 three days earlier) was tested that very day to see if she was a possible donor. Once we learned that she was not (there is less than a 25% chance that a sibling will be a compatible donor), Be The Match started their search.

“We learned that a match had been found a few weeks later and that they had said “Yes”! We knew nothing other than that about the donor at that point and Caleb had his bone marrow transplant on August 25th, 2010 (less than 3 months after he was diagnosed).

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“We kept in contact with Caleb’s donor via written letters. These letters had to be very vague and were screened by the National Marrow Donor Program, so as to not give out any personal information (no names, locations, etc.). After one year, we were able to contact each other. Her name is Missy, and she is married with a little boy and another on the way now! We met for the first time on August 25th, 2012, when they flew to Minnesota!”

Caleb is now 5 years old and celebrates his ReBirthday (complete with a marrow donor drive) each year to remember the day of his transplant, thanks to Be The Match. You can see a feature CBS did on his 3 ReBirthday here!

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Be The Match has worked to build the largest and most diverse marrow registry in the world, reminding individuals that joining the registry and potentially being a match for patient in need is easy as completing a registration form and giving a cheek swab to be tissue-typed.

Donor registry drives happen regularly in a variety of areas – you can search within your area here. Be The Match and the Gopher Football team are partnering up to host a marrow drive on April 15 to present The More, The Marrower at Coffman Hall – they promise a quick, painless, highly impactful experience! According to the Be The Match website, about 1 in 500 members will go on to donate marrow.

Are you a member of the registry? Do you have a personal experience with someone receiving a marrow transplant? Share the story here!

Maisy Becomes Little Miss Hope

Tuesday, April 1st, 2014

HannasHopeWEBSITEfiles~2014PicturesandBios~~element129If you read the blog we posted about Maisy prepping for Pageant of Hope, you already know that this little girl has been busy preparing to hopefully be crowned Little Miss Hope. This past Saturday, PHS was proud to watch her earn that title at the Crowne Plaza in St. Paul. Pageant of Hope is a pageant for girls with special needs or challenges, offering opportunities to gain self-esteem and empowerment.

Maisy cowboyMaisy spent the evening participating in introductions, casual wear (check out her cowgirl outfit in the picture on the right), formal wear and finally the crowning where she was named Little Miss Hope – the coveted title for her age group. She spent the evening being the outgoing, spunky girl that she is so well known to be, charming the audience and announcing that Elijah, her brother, is the superhero she would most like to be. You can see the video of her explaining why here – it can’t be missed.

IMG_0923We are so proud of Maisy for how far she has come and thankful for Pageant of Hope. All of the participants brought their own individuality and incredible personality, and this pageant was a chance for them to make friends and dream big. We can’t wait to see what you do next, Maisy!

 Has your child been involved in any pageants or events that focus on bringing opportunities to individuals with unique needs or challenges? Leave their story in the comments – we love to hear about the amazing things these kiddos are doing. 

Know the Nurses: Joe Putz

Friday, March 28th, 2014

If you have a private duty nurse in your home, you already know what an important part of your life they become. Today in Know the Nurses, we’re introducing you to one of our private duty nurses, Joe Putz, RN, who has been with PHS since February. We already know these nurses provide comprehensive, round-the-clock care for patients in their homes every day, but here are a few fun facts about Joe you might not know.Image

  • I was born and raised in Arcadia, WI
  • I received a Diploma in Practical Nursing from Minnesota State College Southeast Technical in Winona, MN, and an Associate’s degree in Nursing from Rochester Community and Technical College in Rochester, MN
  • My Nana was a Nurse Practitioner and also taught nursing school (her picture is the second down)
  • I recently relocated to the Twin Cities in February to work for PHS001
  • I went on a hiking trip in the Teton Range.
  • I’m continuing my education at either Augsburg College or Saint Marys University here in the Minneapolis to obtain my Bachelors of Science in Nursing and have a goal of becoming a Family Nurse Practitioner degree.
  • I have traveled to England, France, Switzerland, Italy, Canada, the Bahamas and Ecuador. I’d like to travel to India and Thailand someday!
  • I previously worked at the Mayo Clinic- St Marys Hospital on a Cardiovascular Surgery Progressive Care Unit as a Patient Care Assistant.
  • 555I am a self-proclaimed foodie (actually, I’m a picky eater, but love to try new restaurants!) I have recently been to Eat Street Social in Minneapolis, Coup d’etat in Uptown and Zzest in Rochester. I’ve got my eye on Burch, Boneyard and Ice House in Uptown.
  • I am an active yogi – I enjoy vinyasa flow sequence.
  • I’m loving peds nursing because kiddos are so resilient; it’s hard to bring them down. It’s been so fun seeing them thrive at home!
  • Bahamas 061I run for fun, just to enjoy the fresh air, good beats and me time. I’m looking forward to running along the Mississippi near my house in the upcoming months!
  • I am involved in a Rochester-based organization called Hands For Humanity. Hands For Humanity is a nonprofit charitable foundation reaching out to meet the needs of underserved children and families primarily from Ecuador. Volunteers work in partnership with local service and medical groups to enhance quality of life through medical and surgical exchange programs, local service projects and cultural and educational enrichment opportunities.IMG_0175
  • I took part in a twelve day Medical Mission trip in February 2011 through Hands for Humanity. I’m looking forward to going on one of their fall trips to the orphanage! The photo to the right is from my previous trip to Ecuador. You can learn more about this organization here.

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We love learning more about private duty nurses and hearing their stories. Do you know a PHS nurse who you’d like to see highlighted? Leave his or her name here or on our Facebook page and we’ll take it from there!

Parents Helping Parents: Finding Time to Exercise

Tuesday, March 25th, 2014

We hear it all the time – exercise has a great impact on your overall health and longevity. But for the parent of a medically-complex child, taking the time for themselves can be difficult and end up low on the to-do list – so we asked parents how they find time in their busy schedule to work out in this edition of Parents Helping Parents.

Most of these don’t involve having to leave the house, and can even be done if you’re at the hospital with your kiddo. Small amounts of time spend exercising can add up fast and have a great impact on your health – so add your best tips in the comment section, and get moving!

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Creating A Reusable Coloring Book

Friday, March 21st, 2014

With how cold this winter has been, we had a feeling a lot of kiddos were spending time inside coloring. So to make sure they were seeing pictures of kiddos that are just as amazing as they are in their books, we created a set of coloring sheets available for you to print and use that show kids with all the accessories –  trachs, g-tubes, wheelchairs, vents and more.

We thought it would be even better if they could be printed once and used over and over, so we decided to try a project – creating a reusable coloring book. With a few items that you likely already have at home, you can create one too using the pictures from our page or your kiddo’s own favorites. 5 pages or 50, this is a great way to color favorite pictures, erase and start over. See the process in 8 steps below, and give it a try! Then take a picture of your kiddo using the book and post it to our Facebook page – we love to see their creativity.

Reusable Coloring Book_3.21.14

Life with Grace: Meet the Schwertfegers

Tuesday, March 18th, 2014

Long after a child is off services with PHS, a parent holds memories of rooms filled with equipment, feelings that came with the unknown ahead, and the joy of watching their son or daughter reach milestones. This is no different for the Schwertfeger family. But instead of keeping the memories of their experience with their child Grace to themselves, Jennifer decided to write a book about her daughter to help other families in similar situations.

“It’s a resource for parents of premature babies, because it is overwhelming,” says Grace’s dad, Michael.“It’s almost like becoming a respiratory therapist or a doctor overnight.”

“The big message is to never give up,” adds Jennifer.

PHS had the opportunity to meet with the whole family (mom, dad, Grace, and her two sisters, Autumn and Faith) earlier this month to hear their story and see how well Grace is doing, years after coming off of service with PHS. Hear what they had to say about their journey, and Jennifer’s new book Life with Grace, in the video below.

March is Trisomy Awareness Month

Thursday, March 13th, 2014

When most people are born, they have 23 pairs of chromosomes for a total of 46 chromosomes. For those born with a trisomy condition, they have an extra chromosome in most or all of their cells, for a total of 47 chromosomes. While trisomy can occur with any chromosome, the most well-known syndromes are:

  •  Trisomy 21: more commonly known as Down syndrome
  •  Trisomy 18: also called Edwards syndrome
  •  Trisomy 13: also called Patau syndrome

PHS patient Lucas, who is thriving at home at 12 years old, has Trisomy 21, Hirschprung’s Disease and short bowel syndrome - but there is so much more to him than these diagnoses.

Catching Up With Lucas

_T6K6139At just six days old, Lucas had most of his large intestine removed. At four months, he had a large portion of his small intestine removed. He was in critical condition and there was a doubt that he would live more than 24 hours.

“PHS met us at the hospital when we first took Lucas home,” his mom Julie explains. PHS helped her prepare the house and achieve consistent care. You can learn more about the beginning of their journey in this video:

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Lucas Hagen (14)Today, PHS manages Lucas’s nutrition through TPN, feedings, and works on infection control to keep him healthy. Regular lab draws ensure he’s staying on track. This active boy loves playing basketball and baseball (see him in action on the baseball field in the picture to the right), loves eating Goldfish, and school.

Do you have a child with a trisomy condition? Tell their story in the comments! We love to read about these amazing kiddos and their incredible journeys.