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!!!