MRI Results - Pesky Pulmonary Artery

I've been meaning to write this update for a couple of weeks and finally found the time today.

Tyson had an MRI on December 1 and a week later his cardiologist called to set up a virtual meeting to discuss the results.  If you remember from our last update, Dr. Emilie said she wouldn't call us unless there was something alarming. 

We had the virtual call with her and she informed us that the narrowing in Tyson's left pulmonary artery (LPA) and left pulmonary veins is much more severe than before, so she felt it would likely need surgery to repair.  He's had this issue with a pesky left pulmonary artery and small pulmonary veins for quite some time and they've just been keeping an eye on it. Basically his aorta is taking up way too much space and is compressing the LPA, which in turn is compressing his trachea (the main windpipe of the lungs.) So far he doesn't have any troubles breathing or swallowing but if they don't repair it, it could become a problem down the road.

Before talking to us, Dr. Emilie first talked to Dr. Benson from the cardiac catheterization surgical team to see if it could be repaired in the cath lab (involving a less invasive surgery) but he thought it would be too difficult to repair the LPA with a stent or balloon because it would just collapse, and a stent would put even more pressure on the trachea. He thought she should bring it up at the next cardiac surgical conference to get the opinion of all the other surgeons to see if he would require an open heart surgery. She warned us that the surgery wouldn't be a simple surgery, as they would have to try to make the aorta smaller so that there's more room for his LPA. Then once his LPA has more room, they could maybe stent or balloon it in the cath lab later on down the road, giving Tyson a few more options to keep his own heart working for as long as possible.

Brian and I expressed our concern about surgery because Tyson is relatively asymptomatic. If you know him, you know he has lots of energy, he ran the 3K in October again, and he seems to have good heart function considering everything. Dr. Emilie seemed to agree with us and said the surgery could cause other new troubles because of scar tissue.  Ultimately, it would be up to the surgical team to decide the best course of action, but delaying surgery is really just delaying the inevitable. 

So Dr. Emilie presented Tyson's case to the surgical team at their conference on January 10 and we had another virtual appointment on January 12 to review their discussion. Good news! The team unanimously decided no surgery for Tyson! Given how well he's doing, they decided that the risk of complications is just too high, so they'll leave him alone and schedule a few extra regular tests so they can keep on monitoring. He'll now have regular blood work and liver ultrasounds added to his routine tests, so they can watch for further progression of LPA issues. In November 2022, he'll also have a 24 hour blood pressure vest and 24 hour holter monitor. Then next year another exercise test (which he scored amazingly on last year! Both Dr, McCrindle and Dr. Emilie said he had one of the best stress tests they've ever seen on a Fontan patient!)

We are so relieved to hear this good news! It was absolutely agonizing to have this worry weighing on our hearts over the Christmas holidays and into January, and also really hard not to not let on to Tyson that anything was wrong.  We decided not to tell him because we didn't want him to stress out if it turned out he didn't need surgery.  We did tell him after the fact, and he now knows what is going on and is also relieved that things look good for now.  

So... it's another "watch and wait" diagnosis. We are quite used to this, because we've been doing this his whole life. We will not hold our breath any more than we already do, and we praise God that He continues to bless Tyson with remarkable health!

And, in other news, we are switching cardiologists AGAIN. Dr Emilie has had enough of the big city so she's moving to Northern BC to live a slower paced life. Good for her, but so unfortunate for us as we really, really loved her! Tyson's being passed on to Dr. Anne Dipschand. She's one of the staff cardiologists in the Fontan clinic and the transplant clinic, so I guess Tyson will be in good hands with her.

We also found out today that the pediatrician who saved Tyson's life when he was 8 days old, is retiring. We have loved Dr. Murphy over the years and are so sad that we won't see him again. I literally have tears as I type this because if God had not placed Dr. Murphy in the hospital at just the right time on Saturday, November 29, 2008, Tyson would not be here today. Dr. Murphy, we ar
e eternally grateful to you and the wonderful care you've given Tyson over the past 13 years. God bless your retirement! 

Here are a few pictures from Tyson's birthday dinner.