Organ Donation

It's been a little rough in my on line world lately.  Connor, a sweet CHARGE boy, just a few weeks older than Jackson, passed away quite suddenly.  His momma posted a video of him on Saturday night, after a bath, smiling and brushing his hair, not a single care in the world.  Sunday he was in the ER fighting for his life.  He underwent surgery twice, but the damage to his organs was too great and the doctors were unable to save him.  Connor gained his angel wings just a few short days later, while snuggled in his mom's arms.

When I let my mind drift off, the thoughts that come darting in and out are just awful.  I ponder how you equally divide the time when your child is dying, between yourself and your spouse, so that each of you gets their share in those last few minutes.  I wonder what Mason would say or do at Jackson's funeral.  Would he be trying to make Jackson laugh and smile the way he does at home?  Would he understand that Jackson's wasn't just sleeping, but rather that he was gone, forever?  And then I get angry with myself for even allowing my mind to think such things.  Especially when life at home has settled into a normal that almost has a sense of calm and comfort to it.  But all around me are children, and their parents and families, who are suffering.

A three year old girl was playing last week, and sustained an injury.  She was life flighted to Children's hospital, and operated on.  She coded multiple times in the ER, the helicopter, and the OR.  Her brain was robbed of oxygen rich blood for too long.  Her body was placed on ECMO.  But the MRI of her brain showed there was just too much damage, and her parents made the brave decision to remove her from life support.  They also gave the ultimate gift of organ donation.  In their deepest moment of sorrow and pain, they gave the gift of life to other children.  I struggled to sleep Saturday night after hearing of Elise's passing.  I found my brain in over drive.

I have done up Wills and Trusts and that good junk for Chris and I, to take care of the boys.  Chris has always been an organ donor.  I have always not.  There is just something about it that just creeps my ass out.  But, over coffee on Sunday morning, I told Chris that I had changed my mind.  Having Jackson, and being thrown face first into this heart community, had changed it.  It still creeps my ass out, but, whatever.  I digress.  Take what you want if it's going to help another person.  If you haven't made the decision to be an organ donor, let Elsie's story help you make that choice.  Jackson's story is what made mine.

Matters of the Heart

My friend Katie told me that Jackson was going to be our teacher in matters of the heart.  I thought it was cute, but didn't fully understand what she meant by that.  But, I am starting to.  Having Jackson has introduced me to a world of heart kids, and CHARGE kids.  Worlds I never knew existed.  Worlds I suppose I never really wanted to know existed.  But, now I find myself totally submerged.   And whenever one of these kids is sick, or worse, I find myself unable to walk away.  I post and ask for prayers.  I post facts and details and statistics.  I berate my family and friends with requests to wear red in February for Congenital Heart Defects.  And when a child passes away, I feel a small chuck of my heart break off.  It could just as easily have been Jackson, or even Mason, and that terrifies me.  I wake in the middle of the night to check on my kids.  I stand over them to make sure I see their chest rise and fall, rise and fall.  I place my hand over their mouth until I feel their warm breath on my fingers.  And then I crawl back into bed, one ear always listening to their monitors, and I sleep for a few hours and then I get up and do it again.

Having Jackson has given me a voice, to shout from the mountain tops, to anyone and everyone who will listen to me.  I educate that 1 in 100 children are born with a Congenital Heart Defect.  I inform that twice as many children die of heart defects as all forms of childhood cancer combined.  I report that more than half of children born with a Congenital Heart Defect will require at least one massive surgery in their lives.  My sweet Jackson has already had two in his short fifteen months here on earth.

And while it is easy to focus on the negative outcomes, and the losses, I also try to celebrate when there is a win.  When a child is finally approved for cochlear implant surgery that will enable them to hear for the first time in their lives.  When a baby is rolled in for life saving heart surgery, given little chance to survive, and comes out thriving better than anyone hoped or dared to dream.  When a child receives a long awaited and precious gift of an organ donation.

I am humbled to have given birth to such a teacher in these matters of the heart.  I hope that my stories, good bad or otherwise, have opened your eyes to the world around you.  I pray that the lessons you have learned have taught you to hug those you love.  Tell them every single day that they mean the world to you.  Put away your phones and your tablets when you are gathered around the table for a meal.  Play hooky from work, take your kids out of school for the afternoon, and just go run wild at the park, laughing and playing and truly enjoying one another.  Time is a precious commodity.  Spend it with the people who mean the most to you, being present and appreciative and kind. 

Teased by Higher Oxygen Sats

When we were first diagnosed with Jackson's heart condition, one of our first questions was if we should move to a lower elevation.  The doctor said that some kids have a positive effect from lower elevation, and some kids don't.  And if we wanted to know about Jackson, we should take him to the beach for a week and see what happened.  So, of course, we were anxious to see what a drop of 4,000 feet would do for his sats.  The first day, I didn't see much change.  But, then they started to climb, and they topped out in the upper 80s.  Yes, he was still on 1/2 liter of oxygen.  But, we went from 78 up to 87.  His color was amazing.  He was actually pink, and not dusky and blue.  Even his fingers and toes were pink.  His "speed bump" was practically gone.  And then the plague set in, and his sats dropped back into the upper 70s and low 80s.  It's hard to tell if they would have stayed up once he got over the cold.  Or, if his body just had a short term reaction to the lower elevation and would have settled back into the 70s and 80s.

I've emailed Adel to talk about what this means, and if we need to consider moving.  We have always said that if we moved, we'd move to Portland, Oregon.  But their cardiology program ranked #42 on the list.  Denver is #12.  I am not trading 42 for 12.

So, now we are looking at Cincinnati (#5), or Houston (#3).  I can't stand the idea of how hot I'd be in Texas.  Simply can not stand it.  But, Austin only a two hour drive from Houston.  And my bff lives in Austin.  And Chris' bff lives in Austin.  So, that definitely makes Texas a little lot more appealing.  We'd be leaving our jobs and home and friends behind, so moving someplace where we'd already have great friends would make that pill a little easier to swallow.  But, still how do we know if Jackson's sats would come up and stay up, post a move there.  Uprooting and relocating our entire family for an unknown is a pretty scary thought.

So, I am waiting for a clinic visit with Adel in a few weeks so I can pick his brain.  He's very honest with us, and I trust that if he thought it would help Jackson, he'd be the first one to sign off transferring our care.  Jackson is 2 or more years from the Fontan.  And I am not sure I'd be willing to move before then.  Finding a surgeon we trust is hard, and having to replace Jackson's entire medical team seems quite daunting right now.  I've reached out to a few Texas heart momma's and a few Cincinnati heart momma's, and they all seem happy with their care.  The Texas heart momma's are a pretty big group.  That Texas Medical Center complex is jaw dropping.  Over 1,000 acres.  Holy shit!

I really don't want to move, and leave Denver behind.  And I certainly don't want to do it for nothing.  But, seeing how healthy Jackson looked, with amazing color in his face and fingers could be motivation enough to make me pack up and go.  We might also see about another family vacation this summer to Austin to check things out, and see how his sats do.  And to see if I can make it 2 weeks in Texas in the dead of summer without killing anyone.  That might be the bigger challenge!  Ha Ha!  And of course, typical me, I am totally 100% cart before the horse here, as Adel may say that it isn't worth it.

Phoenix, in photos

We rented a house, with a park across the street, whichMason enjoyed!

We went to the zoo, with Aunt Nellie.

We played in the desert at one of dad's favorite places.

Jackson met Grandpa Joe and Grandma Joyce - YAY!!

 

Santa found our rental house and visited, with presents!  Lots, and lots of presents!!

We ate In & Out, Twice!!!

We spent our last night with family.

And then we packed up and went home - boo  :(