Halloween's Past

Happy Halloween everyone!  We are super excited to get dressed up in a few hours and out the door to tear it up in the neighborhood.  I don't have any pictures of my goblins from today yet, but I will have a post up tomorrow.  Enjoy my walk down memory lane of Halloween's past.  Time flies by so fast!!

2000-Tinkerbell

2001-Elmo

2002-Sassy Cat

2003-Sparkly Flying Unicorn

 2004 - Catwoman 2005 - Pocahontas

2006 - Super Kamryn

2007 - Bride of Frankenstein

2008 -- Vampire and the Lion

  2009 -- Dorothy and the Tin Man

2010 - Mad Hatter and Minion 

 2011 - Princess Zelda and Thor
 

2012 - Candy Cane Girl and Black Spiderman

Have a fun and safe Halloween!!

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Pumpkin' Carving

This October is a little different... no fall festivals, no pumpkin patches, no Halloween parties.  We are keeping this little boy healthy, but we can still have fun!!   We decided that we only had a small window of time to carve pumpkins before Halloween.  Our week is full of appointments and we are busy, so we decided to carve our pumpkins last minute on Sunday.  We grabbed a couple pumpkins at Sprouts and called it good! 

The kids loved scraping and scooping the guts and goo.  Owen even did his whole pumpkin.  Then he insisted on carving it himself.   I love this picture my dad took.. check out that back hair.. we have been calling him our little Wolverine.

Gigi decided to do a pumpkin witch and this girl had pumpkin guts in her hair and flour all over her face. 

My dad was being himself and grossing the kids out.  Owen thought it was hilarious.. check out that smile!! 

Kam carved the Grim Reaper pumpkin and did a great job as always. I Love this girl!  We soaked in the cool fall weather, chatted, and listened to her music {she's got good taste}.  I am enjoying all our time at home with her because I know she'll be off spending more time with her friends, than family, soon enough. 

Owen's final project.  He loves all things creepy and scary... especially skeletons.  We couldn't find a single candle, glo stick or anything between our two houses.  Crazy!  So I found Gigi's light up rings and we tried to light up the pumpkins.. no such luck.  We'll see them all lit up on Halloween night. 

We tried the bleach/water soak on the pumpkins to kill the bacteria in hopes that they will not rot before Thursday.  I sure hope it works because Owen is thrilled to show his pumpkin off to all the trick-or-treaters.  This is going to be a fabulous Halloween!!!

Getting Re-Acquainted

We have been home two weeks now and I still feel like I am trying to find my footing.  I am working on creating a routine and feel like I am getting nowhere fast. Maybe my expectations are too high.  I am still working with the school district to establish home bound services to start Kindergarten.  I am also busy trying to find a new Speech and Occupational therapist for Owen.  Getting re-acquainted and updating doctors back home, taking Kam to school/dance, and getting dinner on the table each night.  Whew... it's exhausting.  It's all small stuff, but most days I feel overwhelmed. 

Wednesday was a busy day as Owen had his local cardio transplant clinic {Echo, EKG, clinic visit}.  It was great to see all his echo techs, nurses and docs back home.  Everyone is amazed at how wonderful Owen looks and feels.  We left our visit with good echo results, great Labs results, and scheduled appointments for Nov and Dec.   Our nurse even gave Owen his own hand sanitizer, which he thinks is very cool.  We left with sanitizer, stickers, suckers and little race cars. 

We headed to the pediatrician office after Cardiology for a little visit.  Our normal pediatrician is on bed rest with twins and so we saw her colleague.  We were told by LPCH transplant that Owen should, in fact, get a flu shot this winter.  Ugh.  It's normally six months post transplant, but they figure a little protection is better than none.  Owen's shot won't be as effective due to all the immunosuppression meds, but it will help somewhat.  He was a rock star as always but has a massive bruise on his arm now to boot.

Thursday we visited one of Owen's favorite parks.  I was telling him stories about how Kam went to six years of elementary at this school and we spent everyday after school swinging Mr Owen in the baby swing.  He also had two of his birthday parties at this park.  Time passes too quickly and my babies are growing up SO fast!!

We picked up Kam and Ry at school early and took them to the orthodontist.  Kam had brackets that had to be repositioned on her teeth and they tightened them a ton.  Her mouth was hurting pretty bad, and we are expecting another 6-12 months in braces.  I guess she is on the 3 year plan.. sorry Sis.  

Today we ran some errands and Owen helped me make a Pumpkin Cheesecake for tomorrow.  Kam is so busy with school and dance and getting invited to parties... I feel like I never see her. Tomorrow I will sneak in some pedicure time with my girl.  Carson is doing well.. working and working out {losing tons of weight}. 

I know with time I will get into a routine again.  Owen starts PT at gymnastics next week, hopefully we can get a home bound school eval established, he starts sessions with his local Psychologist at PCH, and I am hoping for a fabulous Halloween celebration.  Kam's costume is super cute, Owen has changed his mind daily, so I have no idea what he will end up being on the 31st.  We have pumpkin carving, pumpkin soup and pumpkin cheesecake in the works for tomorrow.   It doesn't get any more Fall than that!
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Finding our Groove

Being home has been so much more busy that I could have ever imagined.  After a week of being home, we are finally getting into a routine.  I have been downsizing our stuff and simplifying.  Being gone for four months makes you realize how much stuff you have that you don't really need.  The best part of being home has been reuniting with family.  We had a family party last Sunday with my fam and it was so fun to be together again.

Look how big my little Bridgi got!  She will be one on Thanksgiving and she is the cutest little turkey ever.  She still loves her Auntie.. she didn't forget me.  It may have had something to do with the soda I was drinking that she wanted to get her hands on.

Owen requested bbq ribs and corn for dinner as soon as he got back... so that's what he got!

This was the first time ever, that Owen has kept up with his cousins.  He played HARD.  He even got on the trampoline and he hasn't done that in forever.  I have no idea where his shirt is, but he was taking down Gi!  Don't worry.. Gigi was not hurt in this picture.  She was laughing and loves that she can take Owen down and he's not "fragile" anymore.

Then a whole week went by and I didn't take a single picture.  We got Owen registered for Kindergarten and we are working on getting the homebound services set up now.  We had a meeting with his therapy coordinator and I am working n getting his therapies all scheduled again.  We cleaned out every closet and toy and we're still working on Owen's closet (used to be the Den).  That's right, this boy is moving into his own room soon!  Oh.. and I can't forget to mention that Owen is fully potty trained!! No  more a half potty trained.. the pull ups are gone.. well except for bedtime since he has a huge Lasix dose before bed.  So he's 3/4 potty trained!

On Saturday, Owen woke up and puked, followed by a low grade fever {101}.  A dose of Tylenol and he was good as new and never showed signs of another issue.  Random.  Daddy took Owen outside to ride his quad while I made breakfast.  It had been a long time he rode this and loved it so much!  Backstory:  I used to be a nanny.  The boys I took care of got these quads for Christmas one year.  Kam was four, so it was a LONG time ago.  Now Owen is riding the same quad.  Sweet memories. :)

Kam had early release Thur and Fri last week for PT Conferences, and since she's a perfect student I never have to go.  Woohoo.  So we went out to lunch and spent time together instead.  Owen and Kam were spinning in the computer chair when I took this picture.  Owen missed his Sis... there are no words to explain how I feel when I see them play together.

This Sunday, we had a family party at Gpa Todd and Gma Monicas.  Notice Owen's weekend outfit of choice is the same.  Owen loved this ghost/skeleton hanging from Gma's garage.  He is really into Halloween this year.. all things creepy and gross!

Auntie Panfi brought face paints for the kids and did a really great job painting them. 

We had dinner, visited, and Owen wrestled everyone.  It again, was great to see everyone an be back home!  We finally settled on Halloween costumes this week and got them purchased.  I'll keep it a secret for now... only 11 days until Halloween! 

Owen has labs, flu shot, and cardio clinic {echo, ekg} this week with his AZ team.  I am scheduling our next trip to Stanford for two weeks from today.  Eek.  I promise I'll post this week.. I have a lot of blog catching up on Kam's busy life. :)

Home.

We made it home!!  The last five days have been a whirlwind, but we are settling in to our new normal.  Last Wednesday, after discharge from the hospital, we headed back to the RMH to load up our car.  It was a hot mess trying to get all our stuff into the back of the Pilot, but we did it!  I even picked up Carson from the airport only 10 minutes late!  We made the long drive down to Oceanside to meet up with Kam and family.  The drive was wild with rain, heavy winds and rubbernecking in LA traffic, but we made it to the time share by dinner time. 

I got a call when we were about half way to Oceanside from Owen's transplant team.  His rejection scores came back ZERO!!!  I couldn't be more thrilled!!  So instead of turning around and heading back to Palo Alto (not that I would have), we continued our road trip South.

Kam had a great kick start to her fall break!  She went to Oceanside on Sunday with her Richardson cousins.  They went to the USS Midway, Yuma Jail, Music Museum, the Chicken Pie Shop and Knotts Berry Farm!!  She had a great time!!   We met up with everyone on Wednesday night and spent all day Thursday at the beach. 

I also have to give a shout out to Todd and Monica for hooking us up with their timeshare.. we had a fabulous 3 bedroom room minutes from the beach.. it was great!  Owen loves the swings at the hotel.

On Thursday morning, we headed to lunch on our way to the beach.  We love eating Fish n' Chips at the Oceanside Harbor. It's on our short walk to the beach and so delicious.

We got there in time to check out Justin, Ry and Tates castle before the tide took it down.

Owen stayed out of the water and loved being buried in the sand.  He has never loved the beach like this before.  He had a great time!!  The kids first built him a sand chair, or Throne.

Then they turned him into the Sandman {Spiderman's Foe}.  He missed his cousins so much!

I missed this man. :)

The kids were semi dressed for the beach.. Owen didn't have a swimsuit that fit and I assumed he wouldn't get in the water anyway.  He has never liked the cold saltwater and was always held back by a giant oxygen tank.

Turns out he's a beach bum.. just like the rest of us.  He loved the waves!!  He started by just getting his feet wet.

Then he was soaked.  He loved when the waves took him down and then he would play in the thick mud. 

The men built a big channel in the sand for the water to run into a giant hole they built in the sand.  Owen called it his swimming pool.  He loved walking through the narrow channel. 

Kam and the girls were leaping and doing cartwheels in the sand.  Here's my little yoga master.  We had so much fun on the beach together.  The weather was fantastic and we spent hours outside doing nothing but playing.

We came back to the time share to grill up steaks and bbq chicken.  Owen was jamming while he was waiting for his cousins to come.   The entire car ride he would sing Radioactive and Boulevard of Broken Dreams over and over and over again!

We made it home on Friday evening and worked hard all weekend to unpack, catch up on laundry and get things ready for our first real week at home.  Waking up at 5:30am this morning was a reality check, but it's our new normal.  I loved picking up Kam from school and hearing about her day.  I loved making a menu for family dinners.  I love waking up next to my husband in the morning.  It's the little things that I missed the most.   
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Biopsy #8 -- Stenting the SVC

Owen is in the cath lab getting his last bi-weekly biopsy... #8 to be exact.   He was so goofy this morning that we decided to skip the Versed pre-med and he was such a rockstar.  No fear.  He walked into the cath lab, up on the table, and let me countdown from 10 as I held the mask and put him under anesthesia.  He is seriously so brave! 

I just got an update from Dr Peng and Owen is done.  She had to place a Stent in his SVC (Superior Vena Cava) because it is looking more narrow than two weeks ago.  His SVC Gradient was 22, normal is about 8.  He should have been having some serious headaches, but I think he is so used to having high Glenn pressures, so he deals with it.  After placing a 9mm stent, his SVC gradient dropped to 8!!  He should be feeling much better!

What does this mean?  It means we will stay in the short stay unit for another few hours so he can get his last dose of Vanco (antibiotic) and we will go home on oral antibiotics.  He will also have to continue his Asprin daily to use as an anticoagulant.  We got a three month break from daily Asprin, but we will add that to his daily meds.  He will outgrow his stent and need another one placed when he gets older.  Nothing we can't handle. ;)

Now he is off to recovery and then we have a long day/night in the SSU full of infusions.  Crossing my fingers I have a bed to sleep in tonight so I can get rest before a long 7 hour drive tomorrow!

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Preparing to Say Goodbye

June 11th, we started our journey in Palo Alto.  Those first few days I was optimistic that everything would work out, but was so scared that it wouldn't.  My emotions were all over the place and I cried just about everyday.  Owen and I were alone, chillin in a hotel, waiting for a room in the CVICU or the RMH.  We spent plenty of time outdoors at the mall and hanging around Palo Alto.

On June 14th, I was ready to jump on a plane back home because things weren't working the way I'd planned them.  I was so scared to be on this new journey, away from home, with no light at the end of the tunnel.  They found a bed in the PICU and we were admitted that evening.  I'm glad we know our transplant team at LPCH so well, so they know that I am really not an emotional wreck, like I was this week.  We started Owen's IV Milrinone and by morning, he was bumped to the top of the transplant list {1A}.

That week we experienced just a little bit of hospital life as Owen had his PICC line placed and we got him discharged.  I learned how to care for his IV Milrinone outpatient and we got a room at the RMH.  That brings us to the 21st of June.  Again, I was overwhelmed as I felt like a college student moving into my first dorm, only with a critically ill child in tow.  We bought rugs, towels, and had to adjust to using a community kitchen and family room.  If I could go back and talk to myself that day, I would tell myself that this was going to be a life altering experience... for the better!

Owen and I made friends quickly, some have come and gone, but other's are still with us today.  We got into a routine that worked for us and it took a few days until I convinced myself that everything was going to be alright.  I got out there, went to the family dinners provided by volunteers, got involved in crafts, music and BINGO nights. 

I was overjoyed when Carson and Kam came up for their first visit for the 4th of July.  It was just what the doctor ordered and even better, because Kam got to stay for the summer.  We had fun exploring our home away from home.  Then, the day we had been waiting for, the phone call that changed our lives forever.

On July 16th, at around noon, we got the call from Dr Hollander delivering the great news.  I was weak in the knees, punched in the gut and tears streamed down my face.  Kam jumped off the bed with a mix of emotions and I watched as my 13 yr old tried to process her emotions.. joy, fear, excitement.  I could hardly process my emotions as overwhelming grief took over when I thought of our precious donor family.  I took a good 30 minutes to get it together, before I came out and shared the news with Owen.  This video makes me laugh and cry at the same time!  He had no idea how much his life was about to change.


Adrenaline takes over in a moment like this and the best way to explain it is that I went into auto pilot.  Peace took over my heart and I felt nothing but pure happiness for the next 24 hours.  Owen sailed through surgery and his nine day recovery was remarkable!  We were out of the hospital with a new boy.  Owen had only known poor oxygen saturations, poor circulation, half a functioning heart, a leash of oxygen attached to his face and just enough energy to get through the day. 

My husband and daughter went home just a day after Owen was discharged.  There was work and school waiting back home for them.  Owen and I were once again on our own, but we had work to do.  Weekly biopsies, lots of trips to the lab, IVIG and Cytogam infusions, therapies, and then school on top of it all.  We have been so busy the last three months and time has flown by!  Lots of family visitors have helped made the time pass by too.

We have made friends with the valet attendees at the hospital, our friends at the information desk that give us our parking passes, the security guards that print our daily badges, teachers at the hospital school, preop nurses, cath lab teams, every cardiac anesthesiologist, the LPCH cafeteria staff, the whole heart center team, echo techs, the RMH cart volunteers, the SSU nurses and so many more.  We can't even walk around the corner at the hospital without running into someone we know.  It's going to be bittersweet not making our morning trips to the hospital, but we'll be back soon, and again, and again...

The RMH.. where do I start?  They have given us a home away from home.  It's not perfect, don't get me wrong, there are things I won't miss.  The spotty internet, the smell of smokers when getting on the elevator, the early morning false fire alarms, the parking basement in the wee hours of the morning, and the air mattresses.  What I will miss is the amazing staff, volunteers, family and friends we have grown to love and care about.  Owen will miss his friends.  He will miss going out back and playing with an abundance of friends after dinner.  We will both miss music with Don, magic with Art, Sprinkles cupcakes, music classes, cooking classes, craft sessions, Family Album Project photo shoots, Bingo nights, Bunco, the Fire Fighter Birthday BBQs, doing all my laundry at once because I have six washers and dryers, and being surrounded by families that know exactly what we are going through because they are living it as well.  As we joke about it being Real World Palo Alto in here, you get to meet some characters, but overall it's been wonderful.  I have such gratitude for the RMH and what they have done for us! Thank you.

As I sit here looking around our suite, I am half way packed and I am having some bittersweet feelings.  I am so, SO happy to be going home!!  At the same time... this phase of our journey is over.  It has been overwhelming at times, but WE did it!  We made it through a heart transplant!!  My five year old has a new quality of life and for that I am beyond grateful. 

Our journey home will begin this week.  We will be coming back to Palo Alto on a monthly basis for biopsies and infusions.  Our journey home is just the beginning.  Owen is going home on 11 medications, all to keep his body from rejecting his heart and treating the side effects of each medication.  Owen is never "out of the woods" as his body will always try to reject his new heart, which is foreign to his body.  We will always be trying to balance rejection vs immunosuppression.  He will require a lifetime of daily medications and will always be a cautious of illnesses that will land him in the hospital.  You know what?  It's all worth it!!  It absolutely is!!

A boy born with only half a heart, survived three open heart surgeries, many cardiac catherizations, a heart transplant, and he is ready to LIVE LIFE!!!  There is no stopping him!!