Biopsy and Fun

We have had a busy week and the kids have had so much fun.  Owen had another biopsy first thing Monday morning.  Janesa came down from San Fran to spend the night and take care of Logi for us.  It was a lifesaver and Logi had so much fun with "Je-E."  Owen had me bunny suit up and head into the cath lab with him.  He seriously doesn't need me to walk him back anymore because I stand in the corner of the room all by myself as he is Mr Chatty with the entire team.  He doesn't do premeds, he is just laughing because he's excited about the drug induced nap he's about to take. The biopsy went great, his pressures were (RA 2, Wedge 7), and we got a ZERO rejection score!  He continues to feel great, eat well and play hard.  We followed up with labs, echo and clinic appointment on Wednesday morning.  Everything looked great and we didn't need to make any changes to anything.  He is officially off sternal precautions so we can start working his core and upper body strength in Physical Therapy.  All good things.  We are having open conversations about when we can go home.  Our center has a pretty strict rule where they want transplant patients to stay local for three months post transplant because that is the most fragile time period with a new heart.  We are working on getting out of here at about 8-10 weeks post op.  While we are here, we will make the most of it.

Logi loves the "baby room" and the play room.  He is always running off into the lounges and train table room.  I seriously cannot keep up.  Having a toddler in a giant house with 70 other families and telling him he can't go play in certain rooms at certain times alone has me crazy at times.   We go to parks, play out back of the RMH and he loves all the kids around.
Tuesday night there was a couple boys celebrating birthdays in the house so there was a massive nerf gun war on the 3rd floor.  Cake, pizza and lots of kids running around with nerf guns.  It's seriously humbling seeing all the kids fighting BIG battles running around and having fun.  Gage and Owen were tackling Hunter, Logi was pushing baby Alivia around in her baby walker and trying to sneak bites of the birthday cake, and it was happy chaos.
Last night was another "Epic Nerf Battle" out back at dinner time. They were out there for a long time and there must have been 20 kids fighting.  Then as always, there was kid drama and we called it a night.
Owen is eating well and trying new, healthy, foods everyday.  Logi hardly eats anything healthy but will always go for a big bowl of guacamole! When you can't beat them, you join them!  Who doesn't love Guacamole?  Oh and we are totally NOT eating food in our no food allowed RMH room.  I promise we obey the rules!  Life is good and we are all getting thorough these next few weeks until we get the green light to head home.  Logi is happy and Owen loves having Logi with us.  Owen is kicking butt with PT and I haven't used his feeding tube in over a week.  We miss Kam and Carson like crazy!!!  Kam has dance concerts tonight and tomorrow night and this is the second concert I missed this year. :(   I'm so heartbroken that I can't be there because I LOVE watching my baby girl on stage.

We think about our donor families every single day and Owen prays for their families every night.  We will continue to live the best life and make every moment count and honor their gift to Owen.  This is our Happy!

Prom and Weekly Update

It was my first full week with boy boys and we did it!  We are finding our groove at the RMH and hopefully just in time to go home in a few weeks.  Fingers crossed that things continue to go well... no rejection, rock solid labs, and no complications.  The boys are happy to be together and it's been great for Owen's rehab.  I am missing out on so much at home over the next weeks and it's bittersweet.  Tonight was Kam's Junior Prom and I was involved as much as I could be.  Thanks to my mom for helping alter her dress, Larissa for her hair and Carson for loading up on snacks for the girls to spend the evening at our house.  They went to a Japanese restaurant for Teppanyaki, rented a Limo and have a super fun night planned.  She is going to have a great time with her friends!!
Logi has been such a champ getting dragged to doctors appointments, physical therapy and labs.  He is just so happy anywhere we go, but his favorite place is the play rooms at the RMH.  He loves the fish tank at the lab and is obsessed with the train set at the hospital.  We'll see how Monday goes when I leave him with Auntie Janesa while I take Owen for his biopsy.
These boys... LOVE THEM!!
Owen has been working hard on his cardiac rehab.  He loves to get up on the treadmill with his PT and works his legs hard.  He follows up with squats and played some basketball.  It's incredible to see how strong he is getting after being weak for so long.




It has been an adventurous week full of appointments, hanging around the RMH and exploring Palo Alto.  Owen has a biopsy coming up on Monday, followed by clinic on Wednesday and PT a couple days this week.  This weekend is a lazy one and we are just catching up on laundry.  It's hard counting down the days to home when we don't really have a time frame.  The team usually requires these kiddos to stay 3 months post transplant, but they agreed to discuss it at two months for Owen as long as he continues to do well.  Then we'll be back every 2 weeks throughout the summer.  We are in a happy place!!

Our Easter Weekend

We had the best weekend!  Owen and I were so excited to head to the airport on Friday.  Nothing is better than being together, all five of us, under one roof.  It was the first time we were all together at the RMH and it was amazing not having to run back and forth to the hospital.  Logi was so happy to have us all together, but I think he loved the trundle bed the most.  "Jumpy Jumpy" he would jump off the bed over and over again.
We had nachos at the RMH for lunch before heading to the hospital to meet our social worker  and spend some time in pathology.  We were able to see Owen's heart, Aly's heart, and marvel at the miracle it is.  They had removed the coronary arteries to do research with them.. anything to help them learn and understand Coronary Disease better.  It's the number one reason for graft failure and I'd love for it to not be an issue in the future.  There is so little understanding of what actually causes it and there is no cure for it, besides re transplant.


We went out for dinner and then the boys got fresh haircuts.  Carson calls Logi's cut "lawnmower sheek." The Supercuts guy did the best he could I suppose.  :)  We grabbed dinner and headed back for a quiet evening on the patio.  Logi found his first potato bug.  I love the way he scrunches his toes, clasps his little hands together.. man I love this boy!
Daddy grabbed donuts for Easter breakfast while I got the kids up and moving.  There was an Easter egg hunt at the RMH and the kids got even more candy.  Owen found the lucky Golden egg and got to pick out a Build A Bear.  We followed that up with an Easter lunch of hammy sandwiches.



We had bought Owen's favorite ribs from Costco and slow cooked them in the oven a few hours before Daddy threw them on the grill.  The kids broke out the bubbles from their Easter baskets and the night was perfect!!  It was the best Easter and we are so grateful!!!
After very early labs on Monday, we headed out to a new breakfast joint.  Who doesn't love it when they give each child a bucket of toys to play with?!  Kam and I followed that up with Pedicures and she got her nails done for PROM.  Carson had some time with the boys and then we had to head to the airport.
This little guy stayed with us this time and will spend the next four weeks (or so) in Palo Alto.  Today was our first day with an active 2yr old and Owen says "this is not going to be too bad."  Logi is busy but so much fun.  I'm counting down the days until we get to go home and be together again.  More importantly, I'm praying that Owen continues to do as well as he has.  He is eating different foods, gaining weight without tube feeds, and hasn't complained of a single stomach ache (which was a daily event before transplant).  He feels great!!!
We miss Daddy and Sis already but Kam just facetimed and said "I feel kinda free!"  I'm so happy she gets a few weeks to just be a 17yr old, hang out with her friends and enjoy some time to herself.  

Biopsy #4

Biopsy number 4 was a success and we are officially done with weekly biopsies!  We got to the hospital at 8am and he went back around 10.  He was such a goof and always makes it a fun process.  He doesn't love going to the cath lab, but he sure makes the most of it.  On the way to the cath lab he was singing.. "24 24 minutes to go.. I'm gonna be sedated..."
He was done within the hour and I met him in the PACU.  He has woken up pretty fiesty the last two biopsies but after he eats, he is back to himself.  His pressures were slightly higher but in normal range and pretty perfect.  After discharge from the PACU, we headed up to the SSU (short stay unit) to get started on his 12 hour IVIG infusion.
We settled into our tiny isolation room for the night.  Dr Rosenthal and Nancy came down to go over his labs (they look great) and to adjust his meds a little.   Around 4am, we got his bloodwork done and we were outta there!  This was (hopefully) our last iVIG ever!!!!!
Nancy called this morning and his rejection score was 1A, which is pretty much zero rejection!!  SO we celebrated with more chicken.  They talked to Owen about the foods he puts in his body yesterday.  He has a new engine and now we have to fuel it properly.  Good analogy and I could tell him all day the foods he "should or shouldn't eat", but to have the doctors tell him really makes it click.  Today he is eating a better variety and is super excited to try new foods!!  I'm so happy!! :)
We slept in until about 9am since we stayed up until 4 in the morning.  We made our way to Costco for gas, ran a few errands and stopped at the hospital for prescriptions.  We visited with Gage and Cemaia and got to see Karla exit the building.  We are so grateful for where we are today! Tomorrow... we will pick up Carson and the kids at the airport first thing in the morning.  PURE JOY!!!

Passing Time

We have been relaxing and it's been great.  All the days have been meshing into one and time is just cruising along.  We have been chipping away at the steroids, but these cheeks are killing me.  So cute!
Owen has been ravenous but won't venture out of his "snack foods".  Snyder pretzels, KFC spicy wings and Dum Dums are pretty much all he will eat and he doesn't eat much.  I know it's totally not healthy, but I was so thrilled when he ate a couple french fries and a drink of a shake at The Melt this week.  I can't wait to get home and push healthy eating and different foods.  Today he did eat a few bites of lasagna and watermelon.  It's progress!  I guess when you spent 10 months in heart failure and have zero appetite, it takes a while to get back to eating.  I am grateful we have that gtube so I can load him up with the food he needs.
We went to the theater to see our first movie in about a year.  We met up with his friend Ephriam (he had his transplant in Feb) to see Boss Baby and they laughed pretty much the entire movie.  Who doesn't love the new recliners at the theaters?!  So spoiled!
Owen continues to feel amazing!  He is goofy, happy and has a new love of life.  I didn't realize how sick he was until I see him now.  There are no words for the gratitude I feel.   He is so full of joy!
Here we are and it's already Sunday!  Owen chilling in bed, windows open, the wind is blowing in the smell of pine trees from outside. Only a few more days until our family is together again.  This is the happy part of our story. Back home....... Logi loved the neighborhood Easter Egg hunt.  He named off the color of every egg and said "eeeggggEEE" a million times.  Kam has been busy with school, SAT prep, PROM dress shopping and getting ready for her dance concerts.  Carson is just working and keeping the bills paid.  Can't wait to see them in just a few days!!

Biopsy 3

Owen had his 3rd weekly biopsy yesterday and everything went great.  He was out of there within an hour and it was the first time Dr Peng accessed him through the neck.  His pressures were Fantastic and I just got word his rejection score was 1A, which is as great as zero.  Last night we celebrated with a great dinner and RMH Bingo night!   Owen's buddy, Gage, got the call for his heart and Owen has been so excited for him!  The first thing he asked this morning was "any updates on Gage?"  They just posted he is finishing up and everything went great!  So happy for them.  To all the donor families out there... THANK YOU!!!

The CT Surgery team removed his staples in the cath lab and his incision looks gnarly, but great.  He had quite a bit of oozing those first few hours post op due to all his anticoagulant therapies.  The scabs are healing up and falling off and it looks like Dr Maeda stayed right on course from his previous sternal incision.  It's going to look fantastic in about six months.  His chest tube sites are healing well and are finally closing up.

Owen used to love biopsies and now he tolerates them.  He is ready to be done with the weekly visits, but he has one more, followed up with a 12 hour IVIG infusion.  Then we'll get a little break!  

We are trying to have fun and be cautious at the same time.  Owen is still on sternal precautions for another three weeks until his sternal bones heal.  We can't wait to get to the beach, discover local parks and have fun exploring the bay area.  We are being patient and letting him heal a little more first.  School starts back up on Monday, PT kicks in 2-3 days a week, and we'll have Logi here soon too.

Feeling Blessed.

RMH Fun

We had a fantastic weekend and I am still amazed that we are just three weeks post transplant!  Owen looks better than ever and feels incredible.  He keeps commenting on how much better he feels and that he feels stronger everyday.  We are so blessed.  I've had our donor families on my mind a lot this week... we love you and are so grateful!

Saturday night was the formal dance party at the RMH house.  Everyone dressed up and we had a great time.  Virginia (the Family Album Project) was here talking amazing photos, there was a delicious catered dinner and who doesn't love a chocolate fountain for dessert?!  The DJ had the kids dancing and Owen had some super sweet moves.  It was so much fun!

Owen and I read about the process involved in making this Butterfly art work in the Family kitchen.  It's all made of paper and very cool!

This was the first Monday where we had nothing going on.  For everyone at the RMH, you know that Owen has been begging for a big juicy steak.  We headed to Costco today for some amazing Ribeye and had a little cookout on the RMH patio tonight with our friends.  The weather was gorgeous and the company was even better.  Thanks Patrick for doing the grilling.  Owen tried steak for the first time ever (he would never try it before) and he said "it's pretty good".  He ate a few bites but tore into the corn and Debbie gave him a giant rib.  He's more of a rib kid I think.  Now I have enough steak for a steak salad tomorrow and a steak burrito on Wednesday.. win win.

This last photo made me laugh.  Clearly Owen has missed being outdoors this year.  He kept collecting "treasures".. dead leaves and sticks.. and called them "nature."  We need to get this boy out more.  These "treasures" are now in my nightstand drawer in our room.  Sigh.  

Tomorrow is biopsy day bright and early!!

Back home...
Missing these loves like crazy!!  Logi's speech is just exploding.  When he says "Love YOU mama!" .. my heart explodes!  I am going to have them and my husband in my arms in 11 days.  I can't wait.  :)

Blessings from Palo Alto.