Nine Weeks and Counting....

It's already Thursday and I feel like this week has flown by! Owen has been taking several walks a day and loving his freedom. He wears his yellow isolation gown like a rockstar!  Tuesday we made a few laps while talking to GI as we walked.  We went over his whole GI history and came up empty.  His poor tummy has just been nauseated, so much so that he couldn't do much yesterday.  We attempted an elemental formula that has broken down proteins but he just puked it up.  At least he doesn't puke on his blended foods... and it's real food so I feel better about it anyway.  This morning was the first morning he didn't wake up nauseated so we are celebrating!

Wednesday we had an Echo, Ekg, PICC dressing change and Bingo!  Owen's echo looks pretty decent and his EKG was normal sinus rhythm.   His dressing change was better than last week but he is still so anxious.  We have tons of labs pending right now but praying his ANC continues to increase and his other meds stay within range. 

This morning I dropped off my rental car and had my first Uber experience.  I may actually take a shuttle or walk to the RMH tonight. :)  Perhaps I should buy a bike and then I'll really fit in around here. 

Thanks to Jennie and Tyler for the delicious peaches...

Owen got outside and was so thrilled.. until he got hot and wanted to go back to his ice cold room.  At least he felt some sunshine for about 15 minutes.  His likes his "habitat" freezing cold and dark.  

Back home the back to school preparations continue.  Kam got her official parking pass and the girls showed Tate around the High School.  Logi ran around calling out for Kam.. "bo.. booooo".  At least I have a long time before Logi is in HS.

Logi is going to be SO very sad when these teens go back to school next week.  They are so good to this little munch and love on him all day.

Kam got her hair colored and cut yesterday and we'll get one more pedi when she comes up for the weekend.  I'm so excited to have my babies back!

Summer vaca is coming to an end.  At least Logi will have Sammy the Beagle to keep him company.

Counting our blessings.
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School, Walking and GI

Yesterday should have been Owen's first day of 3rd grade.  When I asked him if he was sad to be missing out his response was "Not One Bit!"  He would rather watch YouTube videos in his pajamas all day, even if it means staying in the hospital.  I'm not sure when Hospital school begins, but Owen won't be able to attend due to that darn Psuedomonas. :(  He is going to be heartbroken so I won't mention it yet.  I'm hoping his favorite teachers will come bedside and teach him so he doesn't miss out on too much of 3rd grade.  

In rounds we were told that there is probably going to be zero chance that we will be able to get out of the room to go for walks. We discussed some other long term goals as well.  Long story short.. his ANC (absolute neutorophil count) is increasing and his Hemocrit is rising.  All good things!!  The biggest challenge we face right now is his nutrition.  He is just miserable with nausea and we all want him off the TPN/Lipids as soon as he can tolerate it. He is only taking about 300mls a day via Gtube and he needs about 1500mls a day.  GI came by but they weren't too helpful because our hands are tied on what we can use because just about everything has a drug interaction.  Pray specifically for the team to find a way to help his nausea go away. 

Then the best news of the day.  Someone convinced Infection Control to let us break out of our room!!  Owen is allowed to walk the halls but can't go to common spaces (playroom, cafeteria, library, school).  He has to wear a mask (which he does anyway) and yesterday we were told "clean clothes" but today we heard "clean gown".  Whatevs.. we are out of the room!

 Owen walked and walked and walked some more.  When we got back to the room he said "man I worked up a sweat!  My legs are going to be hurting tomorrow!"  Then he took a 45 minutes bath.  After bathtime he begged to make an experiement.  I gathered up hospital stuff (hand sanitizer, chlorahexidine rinse, ice and syringes) and let him play.

He flipped over his puke bucket and beat on it like a drum and sang "This is Bananas.. BANASAS" (Gwen Stepfani) and his nurse (Jenna) danced around in her yellow gown and blue gloves.  Should have got it on video.  A few nights before he was getting in his pajamas and started singing 'Who runs the world GIRLS.." and was dancing around.  He is keeping his nurses entertained and laughing.

 Back home Kam and her cousins are getting ready for Back To School!!!  I can't believe my litle girl is going to be a Junior in High School.  I'm so sad I can't be there.  I'm pretty sure she's just happy I'm doing all the car shopping from 800 miles away.  Check out Logi munchin down on popcorn...SO much love.

Life just keeps marching along...

Lazy Days

It has been a Lazy weekend for Owen.  We played a lot of Monopoly, Mancala, Spot It, and UNO.  (Thanks Cook Family for the games)  The days have been passing quickly.  Owen worked with his psychologist on Friday and she taught him some meditation therapy to help him zone into his imagination while having procedures done.  For example.. when he plays video games at home and he's so focused on them that he has NO idea that I'm even talking to him or he is just totally ignoring me.  Its the same idea.  We also came up with a reward system and Owen picked the final reward of "Dr Rosenthal spinning in circles for 2 minutes until he is super dizzy during rounds."  Of course he got a kick out of it an agreed to the reward if Owen holds up his end of the bargain.

Life in the hospital is treating us well.  We have very little complaints.  Owen REALLY wants to leave his room and walk down the hall but has been on isolation since his Pseudomonas.  Dr Hollander (another transplant cardio) is on service this week and he said he will talk with infection control tomorrow and see if he can make it happen.  He won't be able to go to play rooms, library or the gym for therapy.. but at least he MIGHT be able to walk down the hall which is kind of a big deal for him.  Pray that this happens please!!

Kam finished up her week of Summer Scrubs and is already signed up for Saturday Scrubs starting in August.  She loves "med school" and is pretty excited she only has two more years of High School and a few years of college before she can start Medical School for real.  At camp she was given the award of "Most Likely to become a Cardiologist."  This girl is going to do great things!

Oh and this little munch is just keeping everyone busy.  Thanks to Connor, Ry, Tate and Larissa for keeping him busy all week while Sister was at camp.  He had a great time and I loved getting daily videos of his sweet little laugh.  I found a pretty amazing deal on airline tickets so I'll be seeing these two VERY soon!!!  I can't wait!

Life is moving right along. I feel like we are finally settled in for the long haul and everything is falling into place in every aspect of our lives.  Everything is going to be okay.  We continue to wait...

Busy Day

Thank you for all the love and well wishes for Sebastian's family.  The mood was somber on the unit this morning and everyone that asked how I was doing got a few tears as a response.  Everyone sends their love to Grey and Liz.  I set up a Plumfund account for them today because the last thing they need to worry about is how to get their baby home to Oregon.  Here is the link for those that have asked.  http://www.plumfund.com/memorial-fund/Sebastian

Owen had another pretty great day... a busy one.  After we drew labs, we had early rounds and then back to back visits from our social worker, psychologist, child life and physical therapy.  Owen has been a trooper stuck in a small hospital room for the past 8 weeks.  The one thing he has struggled with is dressing changes of the PICC line.  Allison (Child Life) brought a doll with a PICC line and Owen practiced doing the process.  Lauren (Psych) is going to spend an hour with him tomorrow morning working on some different coping methods.  He has plenty of resources available to him and so we might as well use them.  Aside from dressing changes, he tolerates everything pretty well. 

 We played Monopoly (the real game) and Owen had me bankrupt in less than 2 hours.  We read the last book in the Diary of a Wimpy Kid series... the boy is getting plenty of summer reading done.  The days are long but we keep busy.  Tonight he took a bath and begged his nurse to let him do the "ice bucket challenge" which he was met with a "no way!" 

Back home.. Kam sent me this video of Logi tonight.  Owen and I watched it about a million times and talked about how much we missed HOME. 

Kam is loving her week at Med school!!!  I'll share more tomorrow after her last day of camp is complete.  Her favorite so far is surgery.. she has pretty steady hands and is super precise.  If only I convince her to go into plastics. ;) 

Carson is working his tail off as it's the busiest months of the year for him.  He is balancing work and home and I am so proud of him.  He has been my rock and I look forward to our nightly chats.  We can do this... the sacrifice of being apart will be worth it.  Praying for a heart...

Life is Fragile

It's no coincidence that people are placed in our lives for a reason.  In 2013, while living at the RMH, we met Grey, Liz and Sebastian.  A toddler with HLHS, just like Owen, waiting for his heart.  His path took a different journey and he ended up with a successful Glenn and Fontan.   Liz and I stayed in touch on FB and they happened to be admitted to the CVICU at LPCH just two weeks before we were.  Liz was walking by Owen's room as he was coding and I fell into her arms.  Today I held her as she got the worst news of her life.  Sebastian went to be with Jesus and the pain I feel for Liz and Grey is deep.  Just yesterday he was riding in his wagon coming by to say Hello to Owen.  Liz comes by daily for a talk.  Our rooms at the RMH were right next door and I had dreamed of the boys playing at the RMH together.  The pain is so piercing.  Keep them in your prayers and never take a moment for granite.  Life is so fragile.

Owen has been sad this afternoon but he knows that Sebastian is with Jesus "feeling no pain or pokes because he is fully healed".  My boy is wise beyond his years.  I celebrate every little moment I have here and I pray for another day each night.  Hug your babies longer, read an extra story, play just another round of the same board game.  Tomorrow is not promised.

Passing Time

Owen has had plenty of good days in a row.  He continues to gain weight appropriately and I think we found his perfect balance of diuretics.  His labs all came back looking pretty good yesterday.  His BNP (heart failure number) is at 4300 which is elevated but great considering. His WBC is increasing slightly but his ANC (Absolute Neutrophil Count) is dropping still.. no idea why.  The hemocrit and hemoglobin is increasing so the increased iron and Epogen shots are doing their job.  Owen's goal in rounds is to have them switch his Epogen injections to IV.. he isn't a fan.

We spend our days playing card games, doing crafts, reading books and watching movies. We wait...

Back home this girl is at Summer Scrubs.  I don't know if I wrote about it, but she was selected as one of twenty four students (out of hundreds of applicants) to be a part of the U of A summer scrubs program.  She spends 7 hours everyday at the downtown campus getting a crash course in Med School.  She is making friends, learning about medicine and enjoying every minute of it.  #myfuturemd

This little guy has been hanging at with his cousins.  Ry, Tate and Connor are having a memorable summer with a toddler around.  These kids are going to be THRILLED to start back to high school in two weeks... they will get a rest from their summer with Logi. :)

Kam took Logi to Costco and sent me this photo of him wearing her Ear Cuff... I think she needs a sister. (not happening)

I'm feeling pretty darn blessed right now.

The Perfect Gift

Today is the 3 Year Anniversary of Owen's first heart transplant.  I am overjoyed when I think of what a gift we have been given.  I then feel saddened knowing that his heart failed after just three years.  I know this was all part of God's plan and we are not walking this road alone.  We wouldn't have had these past three years if it weren't for a special little girl.  (insert tears here)  I know Aly is doing big things in Heaven right now.

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It was July 16, 2013 when we got the call..."We have a heart for Owen."  The adrenaline hit and then the tears flow.  The emotions flooded in...joy, anxiety, fear and hope.   Owen was finally going to get a new start and for the first time in his life...know what it feels like to have a healthy, functioning heart!

After waiting 327 days on the transplant list, a perfect match was found. 

With each signed consent I would break down in tears.  I was grieving  so deeply for a family that was saying their goodbye.   They were signing consents of a different kind.  They were donating their daughter's heart.  A heart of an Angel.

Meet Alyson 'Aly' Rose DeFur.  This beautiful girl's heart beats inside Owen.  

A little girl who loved Jesus with all her heart.  She was a princess and loved to dress up in all things girly.  She was a stranger to no one and said "hello", with a wave, to anyone that caught her eye.  I see a light in her eyes...the same one I see in Owen's.  A love of life and pure joy

We will forever be grateful for the gift that  Sarah and Tom gave us.  One heart meant for two perfect children . 

Everything Happens for a Reason

Sometimes things happen and we don't understand why, but looking at the big picture it all makes sense.  There was a reason that Owen had a cardiac arrest when he did.  We were at Stanford and that is where we are meant to be.  Owen has had a full 7 weeks to heal and get stronger.  He has had IV nutrition and that has helped him gain 7lbs at at least 2 inches.  He has reserves physically that he didn't have before.  He has had time to allow his lungs to heal from the Psuedomonas.  We have hematology on board now to help us figure out why his marrow isn't producing white and red blood cells efficiently. I am learning to trust the process and that all things happen in God's perfect timing.  

We had a pretty good Friday.  Lots of relaxing, he tolerated his gtube feeds and even ate a little more orally.  He seemed to have pretty good energy.  We made a Ghostbuster windsock craft and borrowed the original Ghostbusters from the hospital library.  Owen made friends with the team from Hematology and gave them a rundown on his medical history.  This boy is wicked smart.

Owen had plenty of therapy yesterday and did great.  It's funny how well he responds and works for one PT over another.  They will have the exact same activity and he will refuse to work for one over the other.  The boy knows what he likes and doesn't.  The therapist yesterday was a hit! 

It was three years ago at 11am, we had just arrived back to the RMH after a long morning at the hospital with clinic and PICC line dressing changes.  Dr Hollander called me and told us we had a heart offer.  I remember I was totally sick to my stomach and Owen was thrilled.  Here was his video that I just adore and will always cherish.  Tomorrow is his 3rd Anniversary of the day he was given his 2nd chance at life.
Kam was only 13 at the time and I remember she was so anxious.  She was here through it all and it molded her.. changed her.  Yesterday she passed and is officially a licensed driver!!!  I am so thrilled for her and she deserves it.  I am going to be a nervous wreck every time she gets behind the wheel but I know she will be cautious and responsible.  Stay safe on the roads.. my baby is driving!

We continue our wait....  It's all out of our hands.

Day 52

Owen had a rough day on Wednesday.. lots of nausea and low saturations. Child Life brought him the new Monopoly Deal card game he asked for and that perked him right up.  He is super strategic and wins about every game. Yesterday was a much better day and Owen woke up without any nausea for the first time.  His labs all came back looking pretty remarkable considering.  His red and white blood counts are rising.  The Epogen injections are working along with the iron.  SO just when I'm about to break under pressure or allow the tears to flow... I am reminded that I am not in this alone.  A heart will come..

In the meantime, I will enjoy every moment with him.

Thank you for all the prayers and positive energy... we feel them every single day!

Missing Our Fam

We had the best week with Kam, Logi, Ry and Auntie Sussy.  Owen loved having company and seems a little bummed that they are gone. Owen is going to miss sending the girls out to look for Pokemon on Pokemon GO.  They found some Pikachu around Palo Alto so that made Owen happy!  They played lots of Candyland and Kam made oragami for him.  I got pedis with Kam and took the girls shopping at Macys.  I got lots of snuggles in with Mr Logi and it was perfect.

 Mr. Owen has been feeling nauseated first thing in the morning and has puked a couple times off and on.  One of the fellows in rounds suggested an ECHO or EKG to see if we can identify what the issue might be and then I got a reality check when one of the transplant cardios said "It wouldn't matter anyway."  We know his Coronary Disease is progressive and there isn't much we can do for him.  Increasing Milrinone actually requires more demand on the heart so it's not a solution with CAD.  We are just holding out slow and steady and praying that a heart comes very soon.  Today he looks a little worse than he has in the past.  It's horrible watching him be so sick and knowing there is absolutely nothing that you can do but wait.  I am trying to have faith that things will all work out. 

I did confirm that Owen has no voids on the list so it's just blood type (B+) and size (50-75lbs).  He can accept O donors as well but we know others that have waited MUCH longer so it's very discouraging at times.  CHIN UP MAMA!  I keep pulling myself up and trying to hang in there.  Owen is keeping his spirits up as much as he can.  It's such a bummer that he is on precautions because he hasn't been outside a hospital room for 7 weeks now. We pray every night for a heart to come and for a family to say yes to organ donation.  We pray for Aly's family and give thanks to them for giving us three amazing years.  

Today was hard to say goodbye which is probably also contributing to my sour attitude.  I miss my babies and my husband and can't wait to all be under one roof again someday.  

Life is short.. live it well.  I am off to snuggle my sleeping boy.  We gave him a dose of Ativan for his dressing change and it made him pretty sick (puking, low sats, high RR) ... no more Ativan ever!

Weekend Fun

The past two days have been great. Carson flew into town Saturday morning and we have been busy spending time together. Owen is doing great!  He is getting chubby with all his nutrition and I just want to squish his belly.  He is on a Ghostbusters kick and had to buy the new Ghostbusters Lego set to build with Daddy yesterday. He is going to be SO sad when everyone goes home this week.

This little monkey has been keeping me super busy.  He is super active like his Mama and likes to be on the go.  He loves the little fountain atrium in the middle of the hospital so we go out there a couple times a day to run around, throw rocks and eat dirt.  Sometimes we stop at the gift shop for Rolos to snack on too.

The bond between these two is so wonderful.  Saturday afternoon the girls and Larissa took the Caltrain to San Fransisco to hang with Janesa.   That night when I got back to the RMH with Logi he walked around the room yelling "BO? BOOOOWWW?"  He loves his Sis!  We snuggled all night and it was pure bliss.

 

The girls took the CalTrain into the city on Saturday afternoon.  They rode the BART, Uber, and took a cab all in one day.  They went shopping at Union Square and hit up Japan Town for some Japanese goodies.  They all slept at Auntie Janesa and woke up Sunday morning to hike Muir Forrest.  They were exhausted and Kam's feet were sore, but they had a great time.

On Sunday evening.. Ry and Larissa kept Owen company while we went out for an (almost) family dinner.  Of course we were missing Mr Owen, but it was simple and fun to be out together for dinner.  Logi was a crazy monkey and painted ketchup with his French fries, but it was good to get out.

It's now Monday evening and this post took forever to write. Owen had a rough day.  Daddy flew back to AZ and I had a good meltdown in the hospital bathroom.  Everything builds up and you just have to get it out.  Owen is pretty anemic but we don't want to give him blood as it can cause issues with his antibody sensitization.  We started Epoetin injections this afternoon to help stimulate red blood cell production.  I also started him on enteral Iron supplements.  Crossing fingers this will work!  His white blood count is still very low, but we have to be careful with that because we don't want to cause rejection of his current heart.  On top of that he is pretty fluid positive, so we had to throw in a dose of Diuril to help.  He is up to 53.5lbs which is significantly higher than the 47lbs he weighed when we were admitted 7 weeks ago.  He puked a couple times but he is feeling better this evening. He had an emotional day as well with the new injection and feeling nauseated.  Tomorrow will be a better day....  praying for a heart soon.