A Week in LA

It's great to be HOME! We had a great time together in LA... visited hospitals, Owen had transplant evaulations done and we even snuck in a little DISNEY time during our hospital breaks. Coincidentally, this was the week that some of Carson's family was at Disneyland, so Kamryn got to enjoy it with her cousins. Disney was a nice break from the rest of our crazy trip.

Kamryn and Owen in front of the Main Street Christmas Tree

Kamryn's Magical Tinkerbell face painting
I had to put this picture in because it's the only one that I am in front of the camera or NOT in the hotel room with Owen. Kids... I was there!!

Splash Mountain... NOT Kamryn's favorite ride Owen's face after we just went down the big fall in Pirates of the Carribean

Carson and Kamryn in Autopia... we have 7 more years before she'll REALLY be driving

Grandma Monica braving the teacups with four grandkids Mad Hatter's House

The whole gang .. minus myself because I am behind the camera

It's a Small World all lit up Christmas style

And this is how Owen and I spent the rest of the day while everyone was playing at Disneyland

Now to the medical stuff... We started at UCLA Medical Center where Owen had started with an echo. Moved upstairs to meet the cardiologist who spent over an hour discussing with us transplant options and risks. We met the transplant coordinator and social worker who not only were there to answer every question, but also made us feel at home our entire visit. We met the cardiothorasic surgeon and the surgical NP that will be working with Owen during the actual transplant and they were wondeful. They gave us a tour of the beautiful NEW hospital and UCLA campus (it's like it's own little town). The PICU and Patient Step Down rooms were large and family centered so I could stay and sleep with Owen pre/post transplant. Then they drew Owen's pre-transplant bloodwork to check his antibody levels... this is going to be a huge indicator of his risk of rejection if he were to get a heart. PRAY for low antibodies.

Later, we visited CHLA in the ghetto of LA. We didn't want to make a decision based on location but more of the skill of the doctors. They seemed disorganized, the lead surgeon hadn't even looked at Owen's charts, and they had nothing much planned for our visit. The surgeon we did meet gave us a lot of information and said she also thought it was best for Owen to go straight to transplant. We didn't feel that CHLA would be the best option for Owen. It was an exhausting two days, but we have chosen UCLA as our final transplant facility and couldn't be happier!!

The next step is to get the lab work back. If everything is okay, he'll most likely be listed as a status 2 (at the bottom) for the time being while he is home and doing okay. They also mentioned us bringing Owen out for another cardiac cath soon so they can do just a little more ballooning of his heart. The reasoning behind transplant vs. corrective surgery is this... They can fix his Glenn narrowing but it still won't improve his pressures enough to qualify for the Fontan (the 3rd stage HLHS surgery). Then, they could replace the tricuspid valve, but it will most likely make things worse as the blood won't be able to backup in the atrium as a release. On top of that, his function is still just "BLAH" .

We're really on this journey now and we've jumped in with both feet. It's all a bit scary, but we know in the end that if things work out as we hope, then Owen will benefit from a new heart. We aren't expecting miracles, it's never going to be easy, we're just replacing one heart issue with another.