Catheterization Results: Small Arch and a Weak Left Ventricle

Today Ethan had a cardiac catheterization to help better diagnose Ethan's heart. The results?

1. Severe Diastolic Dysfunction 

2. Severe Pulmonary Hypertension 

3. Moderate to Severe Arch Obstruction

Normally the diastolic dysfunction (left ventricle), the pulmonary hypertension (lung vein), or the arch obstruction (aortic arch) could heal on it's own but the combination of all three makes it very difficult. If his left ventricle was stronger it could help open the arch and if the arch was it's normal size it wouldn't put as much strain and stress on the injured ventricle. Instead, Ethan has a weak ventricle trying to pump through a "pixie straw" to use the analogy the cardiologist used.

I am a visual person and so it was really nice that the cardiologist drew out Ethan's heart for me. Pictured is Ethan's heart and in the top left is what a 5 week old baby's heart should look like. His Aorta is significantly smaller, he has a bicuspid valve instead of a tricuspid valve, and the pressures are much higher (this doctor was very detailed in his drawing, it's awesome). The numbers are the pressures the cardiologist measured during the catheterization. The pressures for the left side of Ethan's heart (right side of the page) are significantly higher than they should be (25 mmHg compared to 8 mmHg). He listed and labeled the findings in the picture. 1. Severe diastolic dysfunction (left ventricle) 2. Severe pulmonary hypertension (pulmonary artery) 3. moderate to severe arch obstruction (aortic arch)

So what are the options? 

1. Fix the Arch - **bypass**

2. Sit and wait to see if ventricle gets stronger

So, the cardiologists and surgeons meet together on Tuesdays and Thursdays where they discuss the cardiac patients (Ethan). We are going to try to keep things stable for now and come up with a game plan after meeting with everyone on Thursday (Ethan did NOT do well on bypass last surgery and it's barely been a month since his last surgery). This is not an ideal situation but the findings explain why the last extubation failed after a week. He has a very stiff left ventricle which backed up to the left atrium which then backed up into the pulmonary veins (lung veins) which reflected into the pulmonary artery and so forth... his lungs just got saturated because of his heart making it difficult to breathe. He needs to be on the ventilator until we get his heart fixed.

For now, we will continue to pray and hope for the best until we meet with Ethan's team of doctors. It takes months for the aortic arch to heal on it's own and with Ethan's situation, there's no telling how many months it will take or even if it can heal on it's own. He would need to be intubated while his heart heals which long term on a respirator would be tracheostomy... Anyways, there is a lot to discuss and a BIG decision to make. I think the surgery to repair the arch is needed but I am afraid his body can't handle the by pass again. And our experience during surgery last month is one I hope to never experience again, ever. :(

However, through this whole experience my perspective on everything has changed. Things that I thought mattered in life really don't and I am a totally different person now. Ethan's life is beautiful and I am grateful for every moment I get to be with him on this earth. I cherish the moments I am at his bedside holding his hand, trying to comfort him, singing to him, and staring into his sweet blue eyes. Even though I can't hold him or even hear his little voice or cry right now, I am his mom and I love him just as any mom would (if not more). He's my baby and his life is a gift on this earth. Stay strong baby Ethan! I love you.

I Will Follow God's Plan

"My life is a gift; my life has a plan.
My life has a purpose; in heav’n it began.
My choice was to come to this lovely home on earth
And seek for God’s light to direct me from birth.
I will follow God’s plan for me,
Holding fast to His word and His love.
I will work, and I will pray;
I will always walk in His way.
Then I will be happy on earth
And in my home above."

My chill little baby burrito (with his leg propped up). Man is he cute!

Relaxed left ventricle

Compressed left ventricle. There should be a significant difference between the relaxed and compressed images but in Ethan's case, thee two images are not very different. This means the left ventricle isn't compressing and relaxing as it should, it is weak and injured... mainly from his last surgery. Another open heart surgery is not very good for an injured and weak heart. :(

This image shows how small his aortic arch is. There are three arteries branching off from the arch to his brain and arms (can you see them?) and those arteries are the same size, if not larger than the aortic arch itself. The arch should be twice as big as it is now.  That's why surgery may be needed.