Recovery & X-rays

Owen was so excited to have an inpatient stay on the cardiac unit.  He spent many months with these nurses and it was so fun catching up!  He rapped for a few of them, gave life updates to others and his room had a steady flow of attention.  Owen complimented our cath lab NP on his scrub cap and he took it off and gave it to him!  He told Owen to wash it first and of course, he put it on.  Pretty sure he is going to rock the cap in every cath moving forward!  He loved every second of it.  We got the only shared room on the entire floor and have a baby roomie, so hoping for some sleep tonight!  

Owen had a late night X-ray tonight to check placement of his stent and coronaries.  I geek out on this stuff, but check out all those coils from his early years as a hypoplast!  The stent in his SVC looks massive!  You can see a couple tiny dots on his heart where those fistulas were closed off today.  Look at those beautiful clear lungs.  Ok, I’ll stop.  It was fun to wander the halls of the old hospital and the new one, late at night.  

We are heading to bed before midnight.  That is a win!

4Yrs Post Transplant Catherization

 

Dusting off the blog for an update...

Owen had his annual cardiac catherization this morning to check for rejection.  His right and left ventricle pressures are great!  The NP came out about 30 minutes into the cath to get consent to balloon his SVC and said he has coronary artery fistulas that need closed.  I signed consent and researched fistulas on google.  

Four hours later, Dr Peng came out and showed me videos on her phone.  She had to place a new stent in his SVC as it was placed when he was 5 and widened again, when he was 9.  That looks beautiful now!

His coronary fistulas are crazy on video and I should have asked her to send me the video.  She couldn’t coil the fistulas off, but she used discs?  It took a while and they were difficult to get to, but one big was was closed off and now those coronaries have blood flow.  The other big guy on the right side of his heart had to be removed and left open for now.  This may make zero sense, I am hungry and tired.  

Basically, we earned a night on the cardiac floor, Owen will be stoked when he wakes up!  Thanks to Traci Robb, she coordinated new flights and hotel accommodations.  

That’s the update for now.  Frequent biopsies continue because Owen apparently likes the hospital too much.  I actually feel so much better writing this out and it’s cheap therapy.  Thanks for reading and praying for our boy!

First Day of School - Covid Style

Today is the first day of school for these boys.  We enjoyed every minutes of our summer break and it doesn't quite feel like school is back in session.  Due to the high cases of Covid in Arizona, all schools are online through October (as of now).  Owen had already decided on doing his online public school program that he completed for 6th grade because it worked really well for him. He likes to sleep in, moves slowly in the morning and then logs into his courses around 11am.  He usually completes his online course responsibilities first and then logs off to work on everything else.

  Logan planned to start a half day Kindergarten program, but online zoom sessions would be a nightmare with him.  He has a lot of energy and has to be actively engaged in his learning.  We decided to go with the same online program for Kindergarten, that Owen is currently enrolled in.  It is a lot of hands on learning with phonics books, white boards, math manipulatives and lots of fun flashcards.  They sent me about 10 boxes full of engaging curriculum and he is so excited to get started!  I guess you could say I am homeschooling since he only spends about 45 min online in the morning to start his day with his teacher and classmates before logging off to learn.

We are excited to adapt to all the new changes around us.  This school year looks different than we anticipated and it's okay.  It is going to be a busy school year for all of us!  I did not forget about Kam and fully expect to post all about her next week for her final year at ASU.  I'll give you an update on how she is doing.

I still have a couple weeks until Nursing School starts back up in full force and still have zero idea what it will look like.

HAPPY FIRST DAY of school to these sweet boys and I am so excited to play the teacher role!

KINDERGARTEN

SEVENTH GRADE - I cannot believe it!

COVID19 - Biopsy Results

These are some crazy times!  I hope everyone is safe and healthy.  We are isolating at home which isn't much different than our norm.  Owen is still doing online school for sixth grade.  All of Kam's University classes were moved to the online platform, which she loves!  Nursing school has moved to online lectures, Vsims in lieu of clinicals and we basically teach ourselves the fundamentals.  Logi has wild energy and keeps us all active and busy.

Owen had a repeat biopsy at Phoenix Children's yesterday to followup on his recent rejection.  His cardiac pressures were elevated which had me on edge, but his echo looks okay (no comparison done yet) and his biopsy results came back as 1A/1R with no antibody rejection present.  His rejection in February was a grade 2, so this is an improvement!!  I will know more on Monday when Stanford reviews the cath report and has all the data to review.  YAY!!

Before all the COVID19 craziness began, Kamryn and Rylee went to Manhattan for Spring Break.  They saw the last Broadway show "Dear Evan Hansen" before they shut it all down.  They had a really good time at the Statue of Liberty, Museum of Natural History, Wall Street, Broadway, and saw everything touristy there was to see.  They even had a scary encounter with a homeless druggy one night. They had a really good time and came home to quarantine for 14 days, before they mandated the stay at home order.  

Nursing school has been the best challenge for me!  We only have four weeks left with three exams, one final and an exit Hesi.  I also have six more hours of online clinicals to complete and a ton of studying.  Our online lecture this week was "end of life" so there's that.  I have made some great friends and am loving the chaos that nursing school brings!

This little cutie is all registered for Kindergarten in the fall, assuming we get this pandemic under control.  He is loving life in isolation as it means he gets more screen time.  The other day I asked him about viruses and he says "they are germs that invade your body and make you sick!"  I love the stage of life he is in and he is such a sweet guy.  I was explaining to him about Owen's biopsy this week and told him they would be removing little pieces of his heart to biopsy them and he said "they will put them back?  Or they will replace them with new pieces?  Or what? "  Life is pretty perfect with Logi in it.

Owen is currently doing virtual physical therapy and I need to get studying for exams this week.  Be safe, be healthy and for all those working in the front line of this pandemic.. .we love you!!  I am so excited to get my nursing degree and get out there to help. My time is coming...

Cardiac Rejection

I haven't been blogging as much as I used to due to nursing school, taking care of kiddos and things have been relatively stable with Owen.  My life is full of chaos and I am embracing every second of it.  If you follow along on FB (Owen's Superhero Heart) or Insta (andreansimmons), then you know Owen had a routine cardiac biopsy this week at Stanford.  His cardiac pressures and coronary arteries looked great!  Owen has been doing so well that we even discussed finally weaning off the prednisone he has been on for the past 7 years!  Results took longer than usual but we are dealing with grade 2 rejection.  It sucks!!!  Owen had a rough time processing the news and it about broke me to see him struggle with the disappointing news.  We both had our moment to process and now we are ready to boss up!   For those of you that don't know how rejection works.. there is a grade scale for cellular rejection... you can read about it here.

The game plan is to followup with the Phoenix team in 2 weeks and head back to Stanford in 4 weeks for another cardiac biopsy.  We are doubling up on his steroids to help kick the cellular rejection.  Please say a prayer for this perfect heart and this incredible boy.  I can only imagine the disappointment he feels and he really was so stoked to have a break from hearing bad news for a while.

Just an update on how well he has been doing.  Owen has been doing online public school and he loves it.  He has made lots of friends from church, in our neighborhood and loves hanging with his cousins.  He loves working out, playing basketball, learning baseball and lifting weights!  You would never know he had a crazy medical history or that he has to overcome so much.  Thank you for all your prayers, kind words, and positive love.

We will push through and continue this battle with congenital heart disease.  We are one of the lucky ones and we don't take a second of that for granted.  Love you all.

Rewind 2019

This year has been a BUSY one for our little family and since I failed to keep up on my blog, I will do a rewind into 2019.  There are a few things I wish I had done differently, but mostly I loved this year.

 January 2019
Kam celebrated her 19th Birthday and started her second semester at ASU.  Owen celebrated his 11th Birthday and had an emergent appendectomy.  We all learned about sleepless nights with a new puppy.

February 2019

Logi may have had a slight addiction to his iPad and could be found hiding under Kam's bed binge watching "WebTube" videos about Minecraft.  It only took a few months to cure his addiction.  Lulu began eating carpet and chewing on shoes.

March 2019

Kam got a stamp in her passport as she traveled with Barrett Honors College at ASU to Trinidad for Carnival!  It was a Spring Break to remember for sure.  While she was gone, Owen was the man of the house and smashed our first (and only) scorpion of the year.  Owen and I took a trip to Stanford for a routine annual biopsy and his heart was looking perfect.

April 2019

The desert started warming up a little later than normal and we had a perfect April.  Lulu discovered bacon and human food.  Kam crashed her car a few times and the final time (not her fault) the car was totaled.  She got a new car in April and no more accidents to date.   Easter was perfection spent at church and with family.

May 2019

Owen finished off his 5th grade school year by writing a report on Alexander Hamilton and he nailed it!  The sling was a slip and fall accident that landed him in the hospital for an evening.  Lulu graduated from puppy training.  Kam wrapped up her Freshman year at ASU.  Logan kept us all busy with his crazy energy but I got a rare photo of him and Lulu sleeping.

June 2019

Momma turned 40!!!  I also got accepted into Nursing school after working really hard so I could compete with a bunch of really smart humans.  We lived in the pool and the boys learned how to swim on their own.  There isn't much to say about June except for we swam a lot to stay cool!

July 2019

Owen and I made another trip to Stanford for another perfect cardiac report.  I am not sure when he grew up, but he is getting so big!  Big surprise here, but we swam in the pool a lot.

August 2019

Owen started back into 6th grade at school and decided quickly that it was not a good fit for him.  He decided to try out online public school and LOVES it so much!  I am his learning coach and he is thriving.  Kam started her fall semester at ASU and I started my ASU courses towards my BSN.  Yikes!  Logan started working on his preschool skills and has ZERO interest in education.

September 2019
Logi started Soccer!!  He wanted to and didn't want to so we waited until the last minute.  He loved the practices, but hated the games.  The rest of us were consumed by school.

October 2019

Dentist appointments resulting in zero cavities.  Halloween parties, pumpkin patch and Trick Or Treating wrapped up this busy month.

November 2019

Logan wrapped up his soccer season with a bang. 
"This is the greatest day of my life... soccer is over!"  I'm not sure we could convince him to play soccer again.  We went to several HopeKids events including a private suite at the Suns game and a day at Main Event.

Thanksgiving 2019

We spent the day surrounded with family.  My family included 6 missionaries and a lot of cousins.  Carson's family party was full of good times as the cousins played Dungeons and Dragons.

Daddy's 43rd Birthday!

December 2019

We kicked off the month with a cardiology appointment at PCH and a visit to the Donate Life tree.  The heart transplant Christmas party, Mended Little Hearts Christmas party and our ward's Christmas breakfast were all super festive.  It was a perfect Holiday season!  Logan celebrated his 5th Birthday.. yes, you read that right.  Kam and I survived finals week and now we relax, breathe and enjoy our short winter break.

Goodbye 2019!  You were good to our family.  You brought some tough times but that is where we find room for growth.  It was a blessed year and we can't wait to ring in the new year and start a new decade!