Hospital Life

Owen had a wonderful birthday weekend and can't believe this is his last year in the single digits.  We layed low most of last week because Owen has been dealing with nausea.  His poor tummy has not been happy.

We did venture out to Bingo with the Stanford baseball team Wednesday night and Owen was the only patient there for a good portion of the night.  Seems like most of the patients are on Isolation right now.  Owen picked a Star Wars baton weapon which he loves!

We have lots of light sabers in here and he loves to fight the nurses, especially nurse Jay.

His birthday was quiet and just perfect.  I stayed up late decorating his room.  We opened presents with family on face time. 

We cranked up the music and spent most the day building Legos together.  The nurses ordered him a birthday cake but he didn't eat it.  His poor tummy. 

We decorated for Valentines and had a few visitors which is always fun.  Nothing extravagant, no big party, and he had the best time.

Goa Todd and Gma Monica flew up from AZ for a weekend visit.  We played a lot of bumper cars and Gpa bought him a remote control tarantula.  He had so much fun and it was sad to say goodbye.

Back home....

Carson gave Logan a much overdue haircut and now he looks way older!

He has been busy playing at the park and is learning how to throw down tantrums.  Love this little munch so much!!!

Larissa sent me this photo this week and I thought to myself "whose house are they at?"  Seriously.. that is our house and I didn't even recognize my home.  

Kam had been so busy and never complains.  She is applying for summer internships, getting letters of recommendations together, setting up volunteering and studying for SATs.  She choreographed a dance yesterday and was so proud of herself for nailing it today.  She takes care of Logi and helps out around the house.  She is amazing!!!

Carson is busy with work and doing all the single dad stuff.  He is doing a great job!  Couldn't ask for a better partner on this journey.  Thanks to everyone for helping out with Logan and feeding my fam.  Love you all!

Hospital living is hard.  There are heart moms surrounding me here and so much support. Brenda.. Thank you for all the home cooked meals.  Chris and Bob.. Thanks for the dinner tonight.  The love is real and I feel so lucky to have you all in our lives.

 

Happy 9th Birthday Owen!

This little Superhero is celebrating his 9th BIRTHDAY today!!

Owen is the bravest boy!  He is hilarious and has a witty comeback for everything.  His laugh is contagious and his smile lights up a room.  He is wise well beyond his 9 years and loves to be around people.  He loves Legos, video games, and watching his favorite YouTube channels.  In school his favorites are Science, Geography, Art and Writing stories. He has the biggest heart and wants others to be happy.  He loves to stay up super late and sleep in late.  He still love to snuggle and will chat my ear off for hours.  He has a very sensitive side, but puts on a tough exterior.  Our hearts are so full of love for this little guy.

Owen..

Your last year has been such a tough one.  It has been physically and emotionally draining on you.  You never give up hope and you keep on pushing through the tough times.  You find joy in the small things and celebrate the big ones.  I am so lucky to be your mom and you never stop teaching me to be a better person.  Daddy, Bo and Logi love you so much and adore everything about you.  I would do anything to keep you in my arms forever.  You're the best!  :)   I hope you always remember how brave you are and what you have overcome as it has molded you into the incredible boy you are today!  Happy Birthday Buddy!  Love you to the moon and back a million times.

Here's a recap of the past 9 years!

Born with half a heart... blessed with a fighting spirit.  You came into this world ready for anything!

His first year was intense full of unknowns.  Two open heart surgeries, 3 cardiac catherizations, transplant evaluations, oxygen, 24/7 NG tube feeds, therapy 3x a week...

At two he was butt scooting around the house, manueving around his oxygen tubing.  We ditched his NG tube and had a Gtube surgically placed.  Owen started being treated at Stanford for heart failure and we had a couple more caths this year.  He was talking up a storm and such a stubborn little spitfire!

By three, we finally had a walking boy!  He would say the silliest things all the time and we knew he was trouble. We told him to bring it!  Owen had his third open heart surgery at Stanford to repair his Tricuspid Valve, another couple cardiac caths and we continued to talk transplant. Owen wrapped up his year with his Make A Wish trip to Disneyworld!

By four, we knew Owen was having a tough time keeping up, satted in the low 60s and was listed for a heart transplant.  He had a great year with many ups and downs, but such a tough guy!!  He continued to work hard with PT, OT and Speech therapy weekly and always impressed us.

Owen's fifth year has been the year of change.  He received his heart transplant in July and has thrived ever since!!!  When we look back at the first part of his fifth year and compare to the last half, we are so grateful for this amazing gift of life he has been given. He had started Kindergarten with a homebound teacher, learned to jump on the tramp, and improved in every area of development.  It's like he is a new boy!

Six has been the year of transformation!!  Owen has physically, emotionally, cognitively.. every area has changed for the better.  He is growing like a weed (finally)...he started 1st grade..he is running (almost), jumping on the trampoline (getting air)..wicked smart in math.. his writing has improved so much.. he is reading (when he has to).   He is happy, smart, funny, and such a delight to be around!  He no longer has hulk rage and his teacher says he is the most obedient, kind boy.  Even with a bajillion biopsies and trips to Stanford, you always have such a positive attitude.

Owen's 7th year started off a little rocky.  I know your biggest goals were to make it to 2nd grade and to finally ditch your Gtube for good.  You have done amazing with second grade at home and the gtube will have to stay a bit longer.

Your eighth year has been a challenging one... a year of survival. Your failing heart has taken it's toll, but you keep on pushing through.  You've spent 192 days in the hospital this past year and you still find ways to enjoy it.  Third grade has been challenging and you have been patient and eager to learn.  You've made friends with other patients, teachers, nurses and doctors.  We are SO proud of you!

Here's to NINE amazing years!!  As always.. thank you to Aly's family for giving us the past 3 1/2 years with our boy... we celebrate this day with you.

Week 34 ... but who's counting

It has been a very eventful week with lots of fun.  Owen made it to school 3 of the 4 days this week!  We did a ton of walking, enjoyed visitors and played hard.

In school they made marble coasters for science and painted Lady Liberty for art.

We walk a lot and sometimes these little legs can't keep up.  So I push Owen and pull the pole behind me.. Good workout.

We played perfection and light bright for OT to help strengthen fine motor skills and work on visual processing.

We broke out the Slime Factory chemistry set from Christmas and made some gross slimy eggs. 

Liz came for a visit.  I can't believe it's been six months since Sebastian went to be with Jesus.  We had a lot of laughs and caught up.  We did dinner at Max's and grabbed drinking chocolate afterwards.  We had a good laugh at the $3.50 shot glass of hot chocolate.

My mom and Gigi flew in on Friday and it has been such a fun weekend!  Owen LOVES Gigi so much.  They have played Minecraft, Legos and he has enjoyed opening up all the presents she bought for his bday coming up.  

Gigi and Owen wanted to be left alone to hang out and play Xbox so my mom and I went out to dinner.  Amazing food and I have enough leftovers for like two more dinners.

Gigi loves exploring the hospital and made friends at the RMH.  She stayed up until almost midnight last night hanging out with Owen's teenage classmates that live at the RMH.

Back home...  Gpa Todd and Gma Monica took the grandkids to an Escape The Room experience.  It was their Christmas gift this year...experiences over gifts for the win.  They loved it!  Kam said it was a viral outbreak and they had to search the room for clues to find the cure.  Can't wait to do this on a date night.

They had dinner at Sauce afterwards.  I feel so lucky to call this group family!

Logi has been having fun!  I wish he'd stop growing up though.  Carson cut his hair today and he was not amused.  He loves his YouTube videos on the "pad" and going outside to play.  He is such a good eater lately too.  He was helping Larissa make chocolate chip cookies and was eating the chocolate chips as fast as she was putting them in.  Oh how I love this little guy!  FaceTime is my life saver.

Missing my babies and my hubs.  Absence absolutely makes the heart grow fonder.  Only a few weeks and I'll have them wrapped in my arms!  

I'm pretty sure Owen is the only patient on this entire unit that doesn't have an isolation tag on their door.  Everyone has something and we are being super diligent in staying healthy!  Lots and lots of hand washing, bleaching and mask wearing.  I've never been so healthy over the winter and I'm living in a hospital.

Prayers and Love.

Unwind

We have been offline most of the week to just unwind.  Trying to de stress as much as I can as hospital living is extremely stressful.  Owen has been doing great and staying healthy.  His WBC is at 1.7 and his ANC is down to 300 (anything under 500 is neutropenic).  His echo showed no major changes... mod/severe dysfunction... but not worse.  We have been hibernating a lot to avoid exposure to all the nasty germs.  Every room in the unit is full of rsv, flu, and other viruses as we are getting the brunt of the PICU overflow.  They have attempted to move Owen into a shared room on a few occasions and even at 2am.. I have continued to resist and advocate.  I have offered alternative options for Owen and the topic will continue to come up.  No one wants to be in the hospital, especially with an immune compromised child, during the winter months.

Nutrition and lack of endurance has been an ongoing issue.  We have to go for daily walks for therapy.  Owen always masks up and we don't touch anything!  We keep creeping up on his calories but he is still the same weight he was when we were admitted in October, which was down 8lbs from discharge in Sept.  The struggle is real.

Since we are isolating ourselves... we play card games, build Legos and plan his bday party in two weeks.  If anyone has any bday in the hospital ideas.. Please Share!!!

Back home... Logi has been a busy body.      I miss my kids like crazy.  So grateful for FaceTime and planning their next trip to Palo Alto!

Kam is prepping for SATs and we are researching the college application process for the fall.  Carson is working hard and keeping everyone fed and happy! 

 

Love from Palo Alto.

 

Organ Donation

In response to several comments on the blog and on other sites I just wanted to address the issue of organ donation.  We would never pray for another child to die.  

I have sat bedside on my knees after almost losing Owen on many occasions.  It is not lost on us how fortunate we are to still have Owen with us.  To be able to spend each day with him.  It's is terrifying watching him struggle to walk down the hall, to barely be able to eat and to be hooked up to IV medication to keep his heart beating.  We watch him carefully and know that coronary disease is marching along in his heart.  Praying we get a new heart before his stops.  We have to balance anticoagulant levels, anti rejection levels and Owen endures more than any child should.  

There is a survivor guilt that all transplant receipients face.  To know that someone's child has to die so that mine can live.  There is an indescribable grief that comes along with it.  

We don't pray for the loss of another child, but that in someone's worst hour, they choose to save lives.  I have seen both sides of organ donation and neither side walks away without being forever affected.  

We are forever grateful to Aly's family for giving Owen the past 3.5 years of life.  It is nothing short of a miracle that her hearts still beats on in Owen.  From CPR to ECMO to cardiac arrest to advanced coronary disease.  God has a plan.  

We have watched so many children pass away to congenital heart disease.  We have lost dear friends close to both myself and Owen.  We have witnessed tragic loss.  When one of these kiddos gets a heart offer there is celebration.  Then an unspoken fear amongst families.  We put on a brave face for our children but we all fear that they may not make it through the surgery.  Most of these kids have been opened up several times and they are very sick.  There are currently five kids on the unit with Owen awaiting heart transplants.  Some waiting for over a year.  These kids are just waiting for a miracle... for a family to say yes to organ donation in the midst of their worst grief.  

Do not make judgements.  Unless you are walking in someone's shoes, you have no idea what their journey is. Kindness.  Compassion. Love. 

 

Don't Share Germs

Owen's PICC placement went well but he had a lot of bleeding.  The ordering cardiologist wanted a cuffed PICC, where they stitch a little cuff under the skin so the PICC cannot move out of place. They allowed me to scrub in again so we could use less sedation and I'm so grateful for that.  Owen has some stenosis above his SVC and hopefully this vein will hold out until transplant.  The following day we had to change his dressing and it was extremely painful! Lots of dried blood around an open wound to be removed and then we had to use Chlorahexidine to clean it.. it was awful and we are glad it's over for a week.  

The weekend was super rainy.  We grabbed movies at Redbox, listed to music and built legos.  We both binge watched our shows on our devices and it was a perfect weekend.

We made it back to school on Friday and again today.  Owen is kicking butt!  We mostly do academic lessons in our room and go to school for projects.  

The entire hospital is overflowing with sick kids.  Every room in the unit has an isolation sign on the door.  Today we were told we may need to pair up with another transplant patient so they can have our isolation room.  I'll just not go there, but it's not happening.  Owen is borderline Neutropenic again (low ANCs) and post transplant waiting for a heart. 

Here is my PSA of the day. If your kids are sick...keep them home!!!  Teach your kids good hand washing. It breaks my heart to see so many kids sick enough that they need to be hospitalized.    Don't spread germs!!

Back Home....

Logi is missing mama. He plays hard and loves on everyone around him. Kam is driving to school and I make her text me when she gets there.  Parents of teenage drivers... Does it get less terrifying letting them behind the wheel?

Logi put Elmo to sleep..."shhhh"

I pray for a heart offer every night.  We pray for Aly's family.  We pray for the future donor family.  This is the hardest journey.  This will be Owens 5th open heart surgery and that is terrifying.  I snuggle each night with this sweet boy and it's all worth it.  The anxiety, the fear and the million grey hairs.  It's all worth it.

Prayers for a new PICC and Kam's Bday!

Happy 2017!  I'll just start with a prayer request.  Owen has to go back to Interventional Radiology tomorrow morning and have a new PICC placed with cardiac anesthesia. On X-ray it looks like his PICC is pulled back and instead of sitting just above his SVC, it flipped up and in a vessel into his neck.  Grateful for our proactive team.

It's been a quiet, rainy week.  We have cranked up our music, built many Legos and played way too many video games.  We just got back into a school routine and Owen is cruising right along.  The Binghams brought Gage's Ninja Turtle piñata on Monday and we let the kids beat it up.  Owen always has a great time with Gage and Hunter. 

Allison came by on Tuesday to visit and cut Owen's hair.  No more shaggy bed head.  Thanks so much Allison!!

Back home...  Kam celebrated her 17th Birthday!!!!  She is the best sister and loves her brothers fiercely!  She is the best daughter and is always willing to help out.  She still plays Pokemon games and loves music to relax.  She loves dancing and is an amazing artist. She can't wait for University and med school.

My dad, mom and Gigi took her to lunch for her birthday and then to the opthamoligist.  She is damaging her corneas with her contacts so she has to take a contact vacation, use steroid drops and we will get her eyes healthy again.

She had a fun Birhday dinner with Carson and Logi before heading to the pick up her ride.

Happy Birthday Sweet Girl...you are amazing!!!