Sarah, book the trip.

 

Payne Party of 5 is heading to Florida for Christmas.  We've been planning the trip for a couple of months, but as we've been conditioned.... we never let ourselves get too excited for big events.  All too often things don't work out because of Madelyn's health.  So yes we're just telling most people now, 5 days before we go.  But I promise, it wasn't a rash middle of the night decision, and no I don't think I've lost my mind, yet.  Yes, we did get trip insurance in case we had to cancel last minute, we're not that naive.  :)

Rewind to September.  Greg is in his new career as a full-time firefighter, working that weird 24 hour on/off schedule.  We notice that he is scheduled to have the 4 days across the holidays off.  Then, Greg gets 1 additional vacation day to use.  Hmmm we now have 6 days off.  Then we start getting cocky thinking "hey, Maddie hasn't been hospitalized since before Arlo was born... she's doing great... maybe we could do a trip?"  

Thank goodness for my wise special needs mom friend, and also for Madelyn's care coordinator, who both said "Sarah, book the trip".  So I reached out to various facebook groups for special needs parents, looking for recommendations and tips!  Flying with Maddie will be an undertaking, but we are hopeful and confident that we can handle it.  (Look forward to me posting a picture of Greg and I managing 3 kids and 3 truckloads of luggage).  We rented a ground level condo in a resort with pools, playgrounds, and splash pads, and plan to go to the beach.  We even got hooked up with a company that rents wheelchair accessible vans.  All thanks to the experiences and recommendations from other families like ours.  And of course, I have a 5 page Google Doc going between Greg and I of every detail, every form needed for Maddie's oxygen and meds onboard, and every item we've ever owned that needs to be packed.  

Well life has a funny way of working out.  We booked this trip early fall.  Then about a month and a half ago, we noticed Maddie was starting to show us some signs of pain when we moved her legs in a certain way.  We took her to the orthopedic surgeon locally.  He said that her right hip was dislocated (common problem unfortunately for non-ambulatory and spastic kids).  That was the source of pain.  Last week we went to Gillette Specialty Children's Hospital in St. Paul to meet with the orthopedic surgeon who specializes in hips there.  She and her surgical partner believe that Maddie's best course of treatment will be hip reconstructive surgery.  Now that totally sucks.  We are 110% dreading it.  And I actually told them not to call me until January to discuss this, as I needed a break from hearing about it.  

Maddie's last orthopedic surgery was awful (spine rods).  It started the domino effect of lung collapse, infection, diaphragm paralysis and surgery, cold, lung collapse, ambulance rides, etc and that pretty much lasted from September- March of last year.  Knowing that that "could" be in our future again is gut-wrenching.  But, do we want Maddie in pain?  No.  So we will schedule surgery for end of spring.  

But for now, we'll be glad we booked the trip :)

Thank You

 Today is an ordinary Tuesday.  It started with a preschool drop off, then the nurse came to work with Maddie; I'm off on Tuesdays, so dishes and laundry await me.  There's nothing special about today.  But, that is what is so special.  This is my first REGULAR Tuesday in a long time.  Maddie is fine, better than fine actually, her respiratory functioning is better than it's been in a year.  I'm not worried about her right now, and that absent feeling is odd to adjust to.  

I'm sitting at the dining room table, next to the Christmas tree we decorated as a family.  These ordinary moments are everything to me.  Today I have a lot of thank you cards to write.  And as I do this, I am smiling.  The past few weeks have been a whirlwind.  Madelyn's diaphragm condition was only diagnosed one month ago, surgery happened two weeks ago, a week in the ICU, and now we're back to "normal".  

What I am most thankful for is everyone who has supported us.  I say this cliche "it takes a village" quite often, which probably lessens it impact, but it is true.  The week before Madelyn's surgery, Greg lost his job.  Greg carried our health insurance.  As some may know, health insurance dictates your medical care, although we'd love to believe that isn't true, it is.  Madelyn sees a ton of specialists in the Twin Cities, her surgery was planned and scheduled, there was absolutely no way as her parents that we would allow any hiccup with insurance to jeopardize her treatment plan.  So, we immediately converted Greg's health insurance to a COBRA policy, which allows you to keep your exact same health insurance your employer provided, but at a MUCH higher cost (to the tune of $1900/month, and we had 1.5 months to quickly cover).  Was Maddie's respiratory functioning worth this?  Absolutely, yes.  But, was this something we had budgeted for, while also taking into account the loss of an income?  Absolutely, no.  

Enter some very special friends.  They'll of course remain nameless, because like the compassionate and upstanding people they are, they help to help, not for recognition.  They know who they are, and they hopefully know how much we love them.  These friends reached out to other friends and colleagues of ours.  They also reached out to a local community organizer.  Mind you, all of this happened without us knowing.  A few days before we left for the Twin Cities for surgery, we were overwhelmed with financial support.  So much support that we were able to pay our COBRA premiums from the gifts, not from our family budget.  We went into that surgery week as Madelyn's parents, 100% focused on her care, not worrying about the large bill that awaited us.  That feeling is indescribable.  

To have people in your life that offer support and give without being asked is overwhelming.  Our only hope is that Greg and I can give back to our village in the same way.  Thank you for the texts to check in on us, the prayers sent up to God for Madelyn's recovery, the hospital care packages, the secret elves who decorated our house, the friends who sent us their hard-earned money during the holiday season when there's plenty of gifts to buy for their own family, the grandparents who rearranged their schedule to have Ava, the other family members who froze us a Thanksgiving meal so we could celebrate when we got back home, and thank you for reminding us how GOOD people are.  

You all have such a special place in our heart.  And when I think of each of you, I smile.  

To our village

Greg and I try to be transparent in our journey- the highs and the lows.  In the interest of keeping our village informed and subsequently being supported, here we go.....

On Friday, August 30th Madelyn will be having major surgery at Children's Hospital in St. Paul.  This summer we have had frequent doctor appointments and tests to help us make as informed of a decision as we could.  There are risks and benefits to everything, and it's been a big weight on our shoulders. 

The hope is that following this surgery, Madelyn could have an easier winter.  The surgery will prevent her from being able to vomit and aspirate, which is a big cause of pneumonia for her. 

Two surgeons will operate on her together to keep the sedation and intubation time as short as possible, but it will still be 2-3 hours.  Madelyn will spend the first night (and potentially more) in the Pediatric Intensive Care Unit.  Surgery on Madelyn is challenging because she will have a breathing tube.  As everyone who spends time around her knows, Madelyn's breathing is already challenging.  The breathing tube can cause inflammation in the airway making it even harder for her to breathe once it's removed.  This is our biggest fear related to surgery.  Fortunately, she'll be cared for by a top notch pediatric team.

While Maddie is in the PICU at Children's, Greg and I will be able to be with her as much as we want.  To sleep, we will take turns in parent sleeping rooms down the hall, and we'll be provided with pagers so that the nurses can always reach us. 

After Maddie is off the breathing tube and more stable, she'll be moved to a regular hospital room.  Her surgeon said that best case scenario it's 3 days in the hospital, worst case it's 10+.  We're of course hoping for 3 :)  If you remember August 2015, Greg and I spent 19 days at Children's St. Paul.  Thankfully, the regular hospital rooms have beds for parents and a fridge in the room. 

We are fortunate to have supportive grandparents who are taking shifts in St. Paul to be at a hotel with Ava near the hospital, so that she can visit her sister and be with us as a family as much as possible.  We have planned for Friday Aug 30- Tuesday Sept 3 (Labor Day Weekend).  If Madelyn's hospital time extends beyond those 5 days, we'll have to make additional arrangements. 

We are excited to take our mind off surgery this weekend as we embark on a camping trip with Sarah's work friends- getting more use out of Maddie's Make a Wish :)  Next week, Maddie has two pre-op appointments (fortunately those can be done in town) and Sarah has staff development.  Then, we'll head to St. Paul Friday morning.....

As of right now, I don't have any tasks or help that I need.... just your prayers and support.  I'll probably reactivate the Lotsa Helping Hands account once we're up at the hospital, if a need arises. 

Thanks for supporting our girl

The Next

Imagine you are in a car accident.  It's terrifying.  It's painful.  It requires a long recovery.  Your whole family is affected.  You're anxious about getting back behind the wheel.  You can't believe others have gone about their days like normal while you just went through something traumatic.  Hey, I was in a car accident and you're over there talking celeb gossip?!  But eventually, your wounds heal, you likely move past it, and you rejoin "normal" life.

Will you sit at home and worry about what your next car accident will be like?  Probably not, that's crazy, right?  Will you go to the doctor frequently just to ensure you're doing everything you can to prevent another car accident?  Um, no.

While you were in the hospital, were you calculating what things you could do differently the next time your car crashes?  Likely not.

Did you practice how to respond the next time your wounded family member is critically injured?  No way.  What are the odds that any of this terrible trauma would happen to you again?  Thank goodness, they are very slim.

However, I've tried really hard to explain to people what every "cold and flu season" is like for us.  What every respiratory illness entails for us.  It's like preparing for our next car accident.  It sounds irrational, and really, it is.  Parents shouldn't have to live at this heightened level, but parents are resilient, they adjust, they accommodate, and they acclimate to their environment.

Like a car accident, an illness to a medically fragile child comes out of NOWHERE.  One morning you're watching Trolls, but then that afternoon you're calling your doctor for a direct admit to the PICU.  It is predictably unpredictable.

On your work days, you make a mental list each morning of who would get your other child from daycare should you be called away to an emergency.  You give your care provider every single phone number you could possibly be reached at, including your bosses' cell phones- they'll always be able to find you.  You and your pediatrician write a letter and put it in your daughter's backpack for the local ambulance company, with a report describing your daughter's condition should you not be immediately at her side.  The report says exactly what to do when she "gets in her next car accident".

On your off days, you seldom relax because you need to "get ahead" on household chores, on freezer meal prep, on bill paying, on supply orders, etc etc.  You never know if tomorrow might be the day you unexpectedly leave your house for a week because of, you guessed it, another car accident.  Remember last time?  It was so annoying to come home to a messy bathroom, a supply shelf with no feeding bags, and Christmas cards left to be addressed.  Time at home is a gift, better use it wisely.

The majority of your doctor appointments are spent talking about previous car accidents- what lead up to them, how critical they were, and what could be done differently next time.  Often times, you go home with new equipment or a laundry list of interventions to try to ward off that next car accident.  But inevitably, you know that it will happen again.  So you grip the wheel a little tighter and mentally prepare for the next car accident.  Oh, and you try to live a little bit of life in between.

Siblings

 

Today is "National Sibling Day", which is likely a made up holiday.  But all the cute facebook posts had me thinking about my girls.  I looked at pictures of seemingly carefree toddlers and kids and thought "wow".  Ava has had a lot of life experience.  We often joke about her feisty personality, desire for independence, and proclivity for mischief.

But, Ava is also a two-and-a-half year old little girl with a lot of weight on her tiny shoulders.  She is a fierce protector of her sister.  "What are you doing to her?" is frequently said to our home care nurses and hospital staff.  "She doesn't like that" is another.  Ava rubs Maddie's hand and says "it's ok sissy" when getting a procedure.

Another thing she says is "let's see if she'll eat this bagel."  So yes, Ava still is a toddler :)

Ava knows A LOT about medical things.  When Maddie coughs, she says "good job Sissy, keep coughing".  Without asking, she knows to grab the suction machine.  Ava knows that the oximeter sticker goes on Maddie's big toe, and knows how to turn it on.  Ava can partly assemble "the vest" airway clearance system.  Ava knows where sissy's food and water goes, and how to put the tube on.  Ava knows that the cough assist is used after the nebulizer treatment.  She knows what supplies you need to give an enema and what equipment you use to do a bath.

Ava has had to adapt to a life that's hard for most adults to grasp.  At any moment, we may scoop up our things, put on our shoes, and head out the door to the clinic or ER.  She may get dropped off at daycare by Mom on a typical morning, but then unexpectedly be picked up by Grandma because Mom and Dad are in the hospital with Sissy.  She adapts.  She adapts to spending the day with friends and family who don't do things the exact way Mom does.  She adapts to spending every evening in the hospital room and eating dinner in a cafeteria, so that we can have some family time.  But Ava isn't a baby anymore.  She understands what's happening and she gets scared.  At bedtime she tearfully asks where Maddie is and describes how she wants her family to be home.

Bedtime story in the hospital

FaceTime in the morning

As parents, we often wonder how our choices and behavior will affect our children.  Is it the right thing to bring Ava to the hospital every night, or should we stick to her home routine?  Should we expose her to all the medical equipment and cares, or keep those things for Maddie in a separate, off-limits room?  Will having to take a backseat to her sister's needs have long-term consequences for Ava?  We don't have the answers.  We have a toddler who tantrums when leaving the hospital, but lights up when she is reassured with her own two eyes that Maddie is ok in that hospital bed.  We have a toddler who is constantly getting into medical supplies faster than I can get them put away.  But, perhaps, she'll become a nurse or doctor with firsthand compassion.  We have a child who is go, go, go, look, look, look all of the time.  But, she's also the first to notice someone in a wheelchair, point out what color it is, and go up to say hi.

Growing up as Maddie's sister is hard, but knowing her sister is important.  And hopefully she's learning some life lessons along the way.

XOXO to all those who support Ava on this journey.

Celebrating Maddie's 5th Birthday

Christmas 2018

        

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