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!!