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