Okay- so Asher had his Cardiac MRI done April 20th, and we saw Dr. Puchalski on the 26th for a check up and to go over the results of the MRI. We were hoping for good news- everything functioning fine, no leaks, no narrowing of arteries, etc. Well.. we didn't get that, though things are not so serious that he needs surgery right away, either.
Asher's right lung is receiving 66% of the blood from his heart, through his pulmonary artery, while his left lung is only receiving 34% of the blood. Ideally, it should be about 50/50. Why is this happening? Nothing was evident on the MRI- his cardiologist was expecting to see narrowing in the left branch of the pulmonary artery, but there is none. All of the lobes of his left lung are getting blood. So, it's possible that some of the really tiny branches of the artery are narrowing, but there is nothing they can do surgically to change it.
Asher's pulmonary valve (the one placed in his surgery at Stanford, since he didn't have one at birth) has a sever leak, about 50%. This is not good news, it means that valve is already going bad, and will need replacement sooner rather than later. We were hoping it would last at least 3 years, but that isn't going to happen. His right ventricle is also enlarged, and function is slightly down, though not to a point where surgery is required.
So, not a great appointment, though it could be worse. What this all means is that we will have another MRI done in 6 months, and see how things have changed at that point. More than likely, a surgery date will be talked about. I would be surprised if we made it over a year from now before he has surgery again. Surgery would be open heart, at Primary Children's (yay! no trip to Stanford!), and would consist of replacing the pulmonary valve, and trying to get more blood flowing through the pulmonary artery to the left lung.
Looking at Asher, you would have no clue anything was wrong. He is small for his age (his height isn't even in the charts, and he is only in the 3% for weight. No football or basketball for him!), but he looks GREAT. He is active, learning to stand and walk, and never stops moving. He babbles constantly, loves dropping things and saying "uh-oh", and calls everything he really wants (bottle, food, toys) "daddy". He has even managed to stay healthy lately! But his little heart just struggles. We are just blessed, and grateful, that they can fix his heart, and that we can stay here in Utah for the next surgery, and we are grateful that it doesn't have to happen right away.
I am sorry the news was as prmosing as you would have liked. The great news is he has come so far. My thoughts and prayers continue to be your family as Asher grows. Geez, none of this is easy stuff.
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Hi Asher!
ReplyDeleteMy name is Jenna and I came across your site. U are a courageous, strong and determined fighter. U are a Brave Warrior, Inspirational Hero, and a Smilen Champ. U are in my thoughts and prayers. Sending hugs to Asher.
I was born with a rare life threatening disease.
www.miraclechamp.webs.com