High Flow

We often find ourselves in the hospital whenever Maddie's respiratory functioning just can't keep up with a virus, pneumonia, allergen, humidity, etc etc etc.  We have oxygen at home, but sometimes that's not enough.  We have a nebulizer.  We have a vest that shakes up her lungs and helps her weak body to clear them out, but sometimes that's not enough either.  There's a tool in the hospital called "High Flow Oxygen" that is her golden ticket to feeling better.  This system takes room air and pressurizes it with an air compressor so that it's blown into her lungs and opens up her airway.  It also allows additional oxygen to be blended in and pressurized through her nose.

Anyone who knows Maddie knows that she makes a snoring sound when she breathes.  But that gets MUCH worse when that poor little girl is sick.  At the hospital, she'll get put on High Flow, and you can visibly see her relax, get comfortable, and feel better.  The snoring sound returns to normal, her rate of breathing slows, and she no longer looks like she's gasping for breath.  That pressurized air keeps her little airways open so she doesn't have to work so hard to breathe.  This allows her body to work on fighting the infection that got her sick in the first place.  High flow is pretty much the number one reason why we have Maddie admitted to the hospital- to decrease her work of breathing so she can recover from illness.

We are beyond excited because this week we got a High Flow machine set-up in our home!  This is unheard of in the La Crosse area.  A respiratory therapist from St. Paul came to our house, set it up, and trained our nurses.  Madelyn's doctors from Gillette Specialty Hospital helped arrange it with the goal of decreasing our hospital time.

Will Maddie still get sick?  Of course.  She's immune deficient and medically complex- this won't change that.  Will she still get hospitalized?  Absolutely.  She needs to be in the hospital when she's critical, and especially when the cause of her illness is unknown.  IV antibiotics, readily available doctors, and life-saving measures happen in the hospital, not my living room.  BUT, the High Flow system should get us out of the hospital sooner.  So, if Madelyn is admitted to the hospital for pneumonia (which is frequently the case), she will get her chest X-ray, maybe do some IV antibiotics, and then once she's stable on High Flow, we will go home and the nurses will monitor her there using our machine.  It takes Maddie a week or more to get over these illnesses, and spending that amount of time in the hospital is terrible.  We miss so much work (everyone I work with is nodding along right now) and it's such a disruption for Ava too.  We could stay in the hospital a day or two, and then bring our girl home to rest and recover with the support she needs.

I could not be more grateful for our supportive pediatrician and local clinic nurses who "get me" and trust our ability to care for Maddie at home.  I also couldn't say enough positive things about our home nurses who truly keep our family going.  Their drive to learn more in the interest of improving Maddie's quality of life is admirable.  I truly wish that every medically complex child was afforded the relationships and support that Madelyn has.

Timing

As many of you know, we had a rocky start to our summer with Madelyn being hospitalized for 4 days and needing to make 2 separate trips to the Twin Cities all in the month of June.  Happy Summer.

I often find myself laughing thinking "what crazy timing".

To really tell this story, I need to rewind about 18 months.  Madelyn was meeting with her palliative care doctor at Children's MN.  He said to us "have you considered applying for Make a Wish?"  I immediately said "what? no! we don't need that"  I left that appointment thinking what in the world, we can't be "make a wish people".  Our kid's condition can't be that serious.  NO way.

Then, 6 months ago, we were at a palliative care appointment at our local hospital for our quarterly meeting.  The social worker there said "has anyone talked to you about Make a Wish?"  I felt defeated.  I said we would think about it, but basically brushed it off.

Then, at the end of May, we received our parent newsletter from Gillette Children's hospital (another facility we now frequent).  In there was an article about a kid very similar to Maddie who received a Make a Wish.  The idea of a trip to Disney (which is a common Make a Wish) sounds horrible to me with Maddie.  An airplane full of people, no access to medical care for a couple hours in the air, a theme park full of more people, heat, humidity, and the obvious fact that Maddie makes her own schedule.  I could only predict that she'd end up being in the hospital when it was time to leave for the trip.  No thank you.  BUT, in this newsletter, this medically fragile child received a camper!  His family was able to take him on local trips, on their own schedule, and they always knew he had a safe spot to go.  This got me thinking.

After school got out in June, Greg and I decided to more seriously consider it, or at least look into it.  I filled out the initial application just to see if Madelyn was even eligible.  The next week, she was hospitalized and it totally fell off my radar.  I was sitting in the pediatric floor lobby reading a book when my phone rang.  It was a Milwaukee number.  My first instinct was to send to voicemail, but I picked up.  It was a Make a Wish staff member calling to get more information about Madelyn.  I talked with her and still didn't think much of it.  Maddie was sick in the hospital- I didn't really care about some potential wish.

Last week, our pediatrician let me know that she received some paperwork to fill out about Madelyn's condition and had submitted it.  So, we knew the process of determining eligibility was at least moving along.

Then, yesterday, we got the call.  Madelyn qualified for and is being granted a Make a Wish!  I was shocked.  I thought sure she might be eligible, but so are lots of kids, so I doubt they would pick her right away.  But, as we've known all along, Maddie is one special girl who steals a lot of hearts.

This will be a process over the next 6 months of meeting with staff, determining what Maddie needs/wants, and then actually obtaining the wish.  Our plan is to get a camper very similar to the one the boy in the newsletter received.  Make a Wish partners with a camper company and has made accommodations and adaptations many times.  We're hoping to get a camper that is wheelchair accessible, climate controlled, has the right outlets for her oxygen concentrator, and has storage for all her supplies!  It felt so "selfish" to be asking for this on the phone yesterday, but when I described it, the staff member just said "yep, that sounds appropriate for her!"  Now the process begins :)

So I titled this post "timing" for many reasons.  It took me time to come to terms with the fact that Maddie would even be eligible for Make a Wish, and what that really meant.  Like I said, 18 months ago I said absolutely not.  And now here we are.  These little coincidences and timing pushed us along and now we're at a place to receive a wish that our whole family will get to enjoy together.

The other timing piece was that when I received the call that Maddie qualified and was being granted a wish I was getting ready to go out.  Over the past year, I developed such a close connection with two of the CMN Hero moms.  I was meeting them for our monthly catch-up.  They "get me".  They have medical kids.  They know the lingo, know the hospital ups and downs, and know the issues you deal with in the community.  It's great.  But to get that call right before going to meet them was awesome!  Talk about timing.  Who better to celebrate with and who would best understand the importance and also the meaning behind it.  These women.  I could write a whole separate post about what it means to find friends who have lived what you're living, and maybe I eventually will.

But for now, I'll just say, timing is everything!  :)

Sarah

So many feelings in one short year

We recently had the honor of attending the Children's Miracle Network Emerald Ball.  It was inspiring, empowering, supportive, emotional, fun, sad, happy, and every other feeling rolled into one.  The video below was created for the ball. It played right before the live auction began.  At that auction, cakes went for thousands of dollars.  Madelyn's painting went for $1500.  It was remarkable to see the community open their (deep) wallets to support kids. 

This video is technically our grand finale of Madelyn being a hero kid.  We will still participate in CMN events (especially Miracle Treat Day and the Radiothon).  But this video sums up our journey.  Seeing the photos of Maddie from infancy to now as a 4 year old took my breath away.  It's hard to believe that one little girl has gone through so much in 4 short years.  She is such an inspiration and over this past year has opened so many people's hearts.  If you're reading this, I hope you find hope in our story. 

Our "Animated" Christmas Card

Like most moms I know, I spend a chunk of time figuring out our Christmas card.  What message do I want to send?  What should we wear?  I hope Maddie is awake.... etc etc.  Below is the Christmas card that we mailed out. 

But, I could've just sent out a simple piece of paper with a web address to summarize our family's year.  Last month, Madelyn's Hero Story was aired on WXOW.  We worked with Dustin Luecke to get footage of our family in the community.  As Madelyn's mom, I am protective of how others perceive her.  It was important to me that she didn't look sick or unresponsive.  We know all of the great things that Maddie can do, but she certainly has her moments where she'll just sleep through an event.  I had my fingers crossed that the story would show the Maddie that we know her to be.  And it did.

Merry Christmas!

Recent CMN Happenings

Click this link to hear our Children's Miracle Network advertisement, which is set to "Here Comes the Sun".
CMN Radio Ad

The Radiothon was such an exciting time for our family.  Madelyn's family members, friends, and school support staff showed up to answer phones during her hour.  And wow, were they successful!

Thank you to everyone who called in to donate!  We had 37 calls and raised over $3600 in her hour.

Team Maddie

Summit Elementary Staff

Maddie's Miracle Phone Bank Team

Up next for us is Madelyn's Hero Story, which will air on WXOW at the end of November.  We've been working on this with Dustin Luecke and are excited to share all the great things happening for Madelyn in our community.  

Thanks for all the support :)

When the Bright Side gets harder to find

This has been a rocky start to our school year, and I have to say that I'm struggling to see the bright side of things.  As I write this, Madelyn is laying on the recliner next to me, hooked up to oxygen after a Sunday spent at the hospital.  These occurrences have somewhat become our normal.  In the 30 days of September, Madelyn has had 6 appointments at our local medical facility.  She's had 4 trips out of town for her specialty care.  We've become used to always being on the go after work and on our days off- a trip to St. Paul for a scoliosis brace, sure!  A trip to Minneapolis for an orthopedic procedure, why not!  Another trip to St. Paul for the immunologist, no problem!  That's our job as Maddie's parents- to make sure she gets the best care possible, wherever that may be.  It may be exhausting hauling a medically fragile child on a 6 hour round trip car ride just to see a doctor for an hour, but we've made it work. 

What gets challenging for me- the highly organized, always trying to be positive, constantly scheduled mom is the unplanned events related to Maddie.  This weekend was the Oktoberfest parade.  Maddie was sick with a cold at the start of it, and by that evening she was seriously sick.  The next morning, we're meeting with our doctor about respiratory supports and the pros and cons of hospitalization as it relates to her palliative care plan.  We're home now, but that doesn't mean she's better. That's something to get used to too.  We'll take over providing respiratory treatments and monitoring her oxygen.  I'll take off work tomorrow since Greg has taken off a lot these past few weeks.  We'll get through it. 

Seizures.  Another challenge for us.  They show up at the worst time.  Madelyn has had two prolonged seizures at school this month.  Each time an ambulance had to be called.  And each time, I was at work, in a meeting.  Getting called by your child's school to hear that an ambulance is coming for your daughter is terrifying.  What makes it worse is the logistics- telling your coworkers you have to leave, trying to find your keys, getting through traffic without getting in an accident, and making it to school to get to your daughter's side without totally falling apart.  One time is what you think of as the worst case scenario.  And when it happens again, it's hard to process.  Worst case scenarios can't keep happening, right?  I really don't wish this aspect of our life on anyone.  There are many amazing aspects of being a special needs parent, but this is not one of them.  Madelyn has recovered, and she will forget it happened.  But Greg and I won't.  We won't forget what we were doing when it happened or how we felt.  We won't get over the fear of it happening again, and furthermore the fear of what if she doesn't recover next time. 

We have absolutely no tie to St. Jude Children's Research Hospital.  But, like the rest of you, I see their commercials and I remember the phrase: "Be thankful for the healthy children in your life and give to those who are not."  For whatever reason, that phrase comes to my mind frequently.  And that's what I'll end with here.  Be thankful for the healthy kids in your life!  Send positive thoughts and prayers to those who are not.  Give us your patience.  I know that this will pass and we'll get through it (hey Madelyn is almost 4 years old!).  Help us remember the bright side. 

xoxo
Sarah

Giving Madelyn a Voice

Over the past year, I feel that I have been given a platform and duty to give Maddie, and kids like her, a voice.  As I shared one year ago, I was asked to write an article for Minnesota Epilepsy Group and Children's Hospital of MN.  This was a wonderful opportunity.  In January 2017, we were approached by Children's Miracle Network as Madelyn was asked to be a hero and brand ambassador for the next year.  Again, this was such a gift to our family.  Last week, I was extremely honored and surprised to be asked by Ron Kind's office if I would speak at a press conference with him regarding healthcare accessibility and affordability, as it pertains to children with special medical needs.  Needless to say, I was shocked.

We've done a few CMN events so far, and I have to say that I leave each event feeling more empowered than the last.  I give our family's speech in front of the 100 or so people at said banquet, and I feel supported.  I am becoming more and more comfortable sharing Madelyn's story.  And, I am also seeing the good that comes from it.  There is such a need for people with disabilities to be better understood, to be included, and to be supported in society.  After each speech, I have had community members approach me thanking me for sharing our story, and more importantly, thanking me for the greater understanding that they now have.  I can literally feel people's compassion and acceptance grow in that room.

Thank goodness I had had these positive CMN experiences as my foundation to public speaking.  When a congressman asks you to speak at a press conference, you don't say no.  :)

Below is the 23 minute, unedited press conference.  I speak from 7:10-10:08 if you want to skip ahead.

I am so thankful for these opportunities, and I look forward to what is it to come.  I'm confident that this won't be the last time I climb my platform and give Madelyn a voice.  

Thank you for watching!