Happy 8th Birthday Owen!!

This incredible boy is celebrating his 8th Birthday today!!  What a miracle and a blessing!!

Owen has a BIG personality.  He is funny, smart, witty and has a kind heart.  He loves to play quietly and enjoys having his own space to imagine.  He will play in his room for hours with Legos and comes up with the best "creations".  He is an Encyclopedia for all things Superheros and wants to become a scientist so he can create "potions and cures."  He loves watching YouTube videos and has been begging me to create a YouTube channel for him all year.  He is reading really well but given the choice, it's the last thing he'd choose.  He can play video games for hours and loves playing with his cousins.  He loves to snuggle and have long conversations.. I often hear him talking Kam's ear off at night when they are supposed to be asleep.   If I had only one word to describe Owen it would be Brave!  No matter what challenge he faces in front of him.. he puts on a brave face and he Conquers. 

Here is a recap of the post I wrote last year... Let's take a walk down memory lane. Look at this little peanut.. born with half a heart and ready to fight.  Who knew that he would be thriving, with a strong new heart, celebrating his 8th Birthday!

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. We are so, SO proud of you!!!  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! 

Thank you so much to Aly's family.  We love you, we pray for you often.  The gift you have given Owen, the gift of life, is celebrated today and always!

Park Play

Sorry I haven't had time to sit and update.  Owen has had lots of labs this past week but we got the go ahead to stop the Lovenox injection.  I think we were all thrilled, but Owen said "you were just getting good at it too." There is five days worth of bruises on his little legs from the shots and my heart goes out to all you heart mamas that have had to do these shots for extended periods of time.  Brutal!  We have been soaking up the amazing weather and spending time at the park.  Owen loves to roll down the grassy hills and comes home exhausted.  He was finally back at Gymnastics this week for PT and kicked butt!  He is working hard with his teacher every afternoon at the house and is catching up on things he missed last year.  Also, we just got word that Owen was approved to have a therapist come to the house for play therapy which I'm pretty excited about.  All good things!

I have been talking to his team at Stanford often and they are just waiting on insurance approval to start the process of the new transplant evaluation.  We aren't listing him anytime soon unless something comes up. 

Owen is counting down the days until his 8th birthday... so exciting! 

We had a little party for Kam and Owen with Carson's family last week.  I found these photos on Kam's phone.  I don't think she reads the blog so I'm safe in posting them. :) 

Kam danced with her High School team at the basketball game on Friday night.  I felt awful because I totally missed it by like 15 minutes.  She is getting ready to start choreography for their spring concert.  The sophomores are meeting with their counselors in the upcoming weeks to prepare their schedules for next year.  Why does it fly by so fast?  She has a full load of AP classes next year and her senior year is going to be intense with college level science classes.  She took the PSAT this year and did really well.  Next year she will do some SAT prep classes and I'm sure she will do great on those as well.  She has big plans!

I love our afternoons, after school, when we can just chill on the couch with the boys and talk about our day.  It is so fun to hear every detail.. she has always just chatted my ear off about her long days at school and I will miss it one day.

This little monkey is 13 months old!  At 26lbs and 32 inches, he is just not a little baby anymore.  We transitioned form Formula to milk and he is mostly only taking a bottle at bedtime.  He only takes one short nap a day and the rest of the time he is just all over the place.  He is the most active, cuddly, talkative boy ever.  He babbles all day long and loves to dance!  It's hard keeping him happy and somewhat quiet while Owen is doing his schoolwork with his teacher.  One day he stole my Sonic soda and kept dumping ice on himself.  Over and over again... Kam and I were video taping and laughing like crazy.  So much for keeping quiet.

Seriously... when did he get so big??  He isn't so sure about the sand and playground equipment at the park, but he just runs around and explores.  I promise he has shoes.. super cute Converse high tops sneakers that Daddy picked out.  They are just impossible to put on his feet.  I need to go buy him some practical shoes that are maybe no so stylish, but instead, easy to slip on.

That is my weekly update.  I really should post more frequently because I keep forgetting great things my kids say or do during the week.  I was looking back at posts from 2009 today and was so happy to read posts about things Kam did after school in 3rd grade (yes, 3rd grade!) and to see how far Owen has come.  This is why I enjoy blogging and will probably not stop for a very, very long time.

A Plan (kinda of)

 We made it home safely last night and crashed hard!  Our Tuesday kick started with a 3:30am shot that I had hoped Owen would sleep through.  No such luck.  We both were up for good!  We had an early morning lab draw at Stanford and that was a bit dramatic, but ended with blood.  We made it to Transplant clinic by 8am and it was an informational visit.  We met with our NP, our new Social Worker (since our favorite Social Worker, Mary, finally retired), our new Coumadin NP, nutritionist and then Dr Rosenthal. 

Breakdown...
Biopsy results came back with 0 rejection.. as always! 

We have to look at short and long term treatment plan options.  We know that Owen has Coronary Artery disease now, but it's not advanced and he isn't showing symptoms from it.  His heart pressures are better than they have been in the past 8 months.  With CAD, the heart muscle starts to stiffen and the heart pressures increase significantly, indicating it's time to retransplant.  We also know that Owen is still being treated for moderate dysfunction with heart failure medications and his heart hasn't fully recovered from last year.  His heart rate is still in the 140-150 range and is causing his oxygen requirements to go up and he burns more energy.  We increased his Carvedilol dose to see if it will have an effect on the HR.  Another option we have is to switch up his anti rejection meds to Sirolimus which can help with Coronary Artery Disease, but can significantly hinder healing.  This is an issue if he requires another heart transplant. More on that in a second.  We are already tackling the clotting issue and Owen had another lab draw this morning (three in three days) and we are hoping his levels are close to the target range so we can stop these darn Lovenox shots soon.  He says they burn and his poor legs are so sore.  He just doesn't have a whole lot of fat anywhere on his body to inject.. poor guy.

As far as looking at the longer term...

Stanford is going to go ahead with starting the process of getting a new transplant evaluation done now.  We discussed in depth where we would like to do transplant (here or in Phoenix) and the option of listing at both centers if necessary (if he were to get very sick again).  I think the plan is to be prepared and ready for anything because honestly.. in Dr Rosenthal's words.. it's the unicorn in the room.  We don't fully understand these zero rejection results, low to no antibodies, great heart pressures, but then we have CAD, depressed cardiac function and a serious biopsy negative rejection episode that was so quickly onset. 

I will know more in the upcoming days as the cardiologists, transplant teams and surgeons have time to talk and look through Owen's images. 

I did speak in depth with the nutritionist and we are significantly increasing his caloric goals (currently 1400/day).  I need to pack some pounds on him, or at least continue to attempt to.  If we can't see a significant increase in weight we will do a metabolic test with pulmonology in April when we fly back.

We had some time at the hotel to pack up and book our next hotel stay before heading to the airport. We will follow up in April for an echo and clinic visit but will bypass the biopsy unless he is symptomatic (YES!).  If we do make the switch to Sirolimus we'll have to do a biopsy six weeks after he start it.. which is a bummer.

Owen is over it all!  He has just had a long few days and needs a little bit of a break from it all.  We have a week or two of frequent labs and hopefully the shots will end soon.  Then we will finally get a little break!  Owen's birthday is in two weeks and I know that would be the best gift ever!  No pokes, no echos, no biopsy around the corner... I'm just praying this is the outcome.  I can't believe how brave he is and how much he has endured in his (almost) 8 short years!  Thank you all for the prayers and support.  It is nice for me to have the support of other families that have walked this path before us and can give guidance.  Thank you all so much!!

Biopsy Findings (CAD and Clotting)

It has been a very long day and I'm still trying to process everything.  Good news first.. .Owen did great!  He woke up from anesthesia like a rockstar.  He was ravenous and ate a ton of food before we were transferred to the Short Stay Unit.  We have spent many hours in the SSU getting IVIG Infusions in the past, so it was nice to know we only had to chill there for six hours.  Owen settled in quickly with a movie while he waited for his lunch to arrive. 

The not so good news.  Dr Peng (his cath lab cardio) came out to discuss the finding of his cath.  There was another large thrombus (clot) in his SVC (Superior Vena Cava).  He just had it ballooned open in October, so to know it clotted again this quickly is concerning.  Dr P spent a while looking at his coronary arteries and she found a pretty large narrowing off the right coronary artery.  Coronary Artery Disease is the number one cause of organ failure and re-transplantation in transplant patients.  The only good news that came from this discovery is that we may finally have an answer about why his heart failed in April and he had a 15 day run on ECMO.  This has been Dr Rosenthal's theory for a while, but we couldn't detect the narrowing until today.  There are so many branches to the coronaries and we don't know if the heart failure caused the blockages or if the blockages caused the heart failure.  Regardless.. it's there. 

 

So where do we go from here?  I talked to our cardios and transplant NP in a conference room for a while, but I won't know anything really until tomorrow.  We have a lot of discussion as there are several "options", not all too thrilling. 

 

If that wasn't enough to digest... we absolutely had to address the clotting issue in the SVC.  Owen has been on Asprin since birth and it's just not doing the trick.  It was decided that Owen be started on Coumadin, which is an anti coagulant that is carefully monitored (via blood draws).  We will start that this evening.  Until levels are within therapeutic range, I had to also start Lovenox Injections twice daily.  I almost broke down in tears thinking about how I could possible go back into Owen's room and explain everything to him.  I took a deep breath and sucked it up.  I walked over to the pharmacy and picked up his needles and new meds and headed back to his room for training. 

 

We had a long chat and he cried a little.  It was heartbreaking!  I didn't mention the Coronary issue because it's too much for one day.  He helped me with the Lovenox training and Child Life brought him a doll to practice injecting the shots himself.  I practiced on an orange and then we went straight for the thigh.. the real deal.  We both survived and agreed it won't be so bad.  I failed to mention he need another shot at 3:30am... we'll see how that goes. :) 

We made it back to the hotel by about 4pm, but not before he had a lab draw.  I finally had a chance to build his Mega Blocks set and he loves his Dragon!  He keeps telling me how much he loves me and appreciates me.  (insert big tears here)  We have early morning labs tomorrow, followed by cardio clinic which will be information overload for both of us.  For now.. I'm going to cuddle my little man and try to get some sleep tonight.  I'll have plenty to update tomorrow.  Thank you for all the prayers!!!

Biopsy 2016

We flew out of Phoenix last night at around 7:30 and made it to our hotel by 9pm Cali time.  Owen is the best traveler and finds everything super exciting.  From eating dinner at the airport, the airplane ride itself, snacks on the plane and taking a quick nap before landing... he is just so excited about it all.  He loves waiting for our luggage at baggage claim followed by picking out our rental car.  The excitement peaks when we get to the hotel and he picks which bed is his.  He was extra thrilled to take a bath before bed since we had a 5:30am wake up call this morning. 

He watched Escape from Earth in preop while I confirmed everything with his nurse.  I suited up in my hasmat suit and we headed to the cath lab around 8:40.  

 Owen picked out a World of Warcraft Megablocks set as his Biopsy "happy" so he is really excited to start building the dragon when he is recovering for six hours in post op.

Owen hopped up on the table in the cath lab, made his anesthesia request for "fruit cocktail" and chatted until he was sound asleep. He is always so brave and I know down deep he is a little nervous each time (he has to be), but he won't let it show.  He is too tough for that.  They are checking everything today.. R and L sides of the heart, as well as looking for any signs of coronary artery disease.  Prayers for good results and an easy recovery.  Owen will be laying flat for six hours so we will be entertaining ourselves with movies and legos. :)

Happy 2016!!

Happy New Year!! We celebrated the New Year by letting Kam have a little Birthday/NewYears party with her friends.  I was certain I would regret it, but they had the best time! I don't know where time has gone, but Kam turned SIXTEEN just after the New Year. I could write a million things that are incredible about this girl.  She is driven, smart, funny, beautiful, talented and always willing to help out.  Some of her favorites at Sixteen are:

Her baby brothers.. she seriously adores them!
Speaking Japanese.. she can't wait to visit.
She loves all thing science and can't wait for medical school.
One Saturday a month she goes to Med School at U of A and gets a little taste of it now.
Dancing, music and choreography...she is always dancing around the house.
She loves art and can pretty much draw anything you ask.
She still loved her 3DS and will play Pokémon instead of going to bed at night.
Accessories and makeup.. she is always buying new jewelry.
She is probably one of the only teen girls out there that isn't on social media.. not interested.
Sweet tooth.. she loves her treats!

Kam chose to celebrate her birthday at the Angry Crab.  We had tons of crab legs and veggies.  They surprised her with a raspberry cheesecake and embarrassed her with a loud sound.  Sorry sis.

We loved celebrating with her and she got plenty of clothes for her gifts. Another big surprise is that she FINALLY (after 4 years) got her braces off!!!  To say she is thrilled is an understatement! 

She has to wear the clear retainers for two months around the clock which is only a small price to pay when she spent the last 4years getting braces tightened.  Just for a little fun.. here is a before pic..

and after...She is so beautiful!

Owen has had his own fun this New Year.  He asked Grandpa Greg and Uncle Rog for Lego Giftcards this Christmas.  He had his eye on some new sets that were coming out on the 1st of January and he couldn't wait to go shopping!  We must have spent an hour in the Lego Store looking around at every single set until he could decide what to buy. His excitement was pretty contagious.

I can't forget my other guys. Logi is such a Daddy's boy!  The minute he walks in the door at night he becomes Daddy's shadow.  As soon as Daddy leaves in the morning he stands at the front door pulling on the door handle.   He can't get enough!  You know what I had plenty of?  The beard!  I am happy to say that it is gone!!  Carson shaved his beard yesterday and that pretty much made my New Year. :)

Here's to 2016!!  It's been a great start so far!!