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.