Levi's Heart: CARDIOLOGIST APPOINTMENT

Tuesday, March 15, 2011

CARDIOLOGIST APPOINTMENT - ALMOST NINE MONTHS OLD

Levi will be nine months old on Friday.

Today Levi had another appointment with his cardiologist. The bottom line is his tests showed that everything is about the same as his last appointment four weeks ago. That's relatively good. Levi's aortic valve is still stenotic, still leaking a lot, his ascending aorta is still significantly dilated (aneurysm), and his left ventricle is mildly dilated, BUT it's not worse than four weeks ago.

James asked Dr. Tajchman if she thought Levi would need surgery before the year is out, and she said yes. So it's coming, we just still don't know exactly when. She wants to see Levi every 3-4 weeks for echos. Once his left ventricle starts to dilate more, then we'll schedule surgery.

Dr. Tajchman is still waiting to hear back from Dr. Hanley at Stanford. I was really hoping to hear that she had already heard from him. Once she does, she'll give us her opinion on the best course of treatment/surgery. Probably a Ross Procedure, but repairing the valve is not totally off the table yet. The Ross would take care of replacing his diseased aortic valve as well as the dilated ascending aorta. If a valve repair was attempted, they would also need to replace the dilated aorta, and I'm not sure what type of material would be used for that. No matter what, Levi will still need several open heart surgeries during his childhood as he continues to grow.

At this point, we continue to move along with our plan of gathering information from hospitals/surgeons. We still plan on meeting with Dr. Starnes at CHLA at the end of this month. We eagerly await hearing from Dr. Hanley, and Dr. Tajchman is waiting to hear a few more details from Boston. So, not much new information today. As much as we aren't looking forward to this surgery, we do look forward to knowing what the plan for surgery will be and who the surgeon will be.

On a positive note, in talking with Dr. Tajchman about open heart surgery, she said kids usually bounce back really quickly. Maybe a week to ten days in the hospital, and then fully healed in about six weeks. Assuming all goes well, he should be able to run, play, and ride bikes as he gets older, just like other kids. She said he may even be able to play sports if he wants, depending on how his heart is doing at that point in time.

Meanwhile, Levi is still doing really well at home, crawling and pulling up on everything. You'd never know so much was going on with his little heart.

3 comments:

Mrs. IncredibleMarch 15, 2011 at 10:02 PM
AMEN! Still praying for guidance for you guys and wisdom for the doctors but Praises to Jesus for today's good new.
Lord,
Pour your love on this family and keep the enemy away from them. In Your Name I pray!
AMEN
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janiceMarch 16, 2011 at 9:24 AM
It's hard to believe little Levi will be undergoing open heart surgery this year, yet we are thankful there is a remedy for his hurting heart. We continue to pray for full health for him and continued good health for the rest of the family. Some inner peace during all this uncertainty would be good, also, and we pray that for you, too. Love you all.
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marriedblisMarch 16, 2011 at 10:01 AM
The prognosis for his ability to have an active life is indeed a praise! We continue to pray for every step on your journey w/Levi's heart condition and especially hope to see you all this month (however brief).
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Levi's Story

After a normal pregnancy, on June 18, 2010 our third son, Levi, was born. He was beautiful, sweet, and as far as we knew, healthy. Doctors and nurses who routinely monitored his vitals in the hospital heard a heart murmur but thought it was normal and would go away within 24 hours.

Everything changed the evening of June 19. Our regular pediatrician was on call at the hospital and after checking Levi's murmur, sent him to the NICU for an echocardiogram to see exactly what was causing the murmur. The echo showed that Levi had critical aortic stenosis, a serious congenital heart defect (CHD). Infants born with critical aortic stenosis have an aortic valve opening so small it is impossible for the heart to pump enough blood to meet the baby's needs.

Levi was quickly air lifted to OHSU in Portland, OR for an emergency balloon dilation catheterization of his valve. The procedure worked to open his valve a moderate amount, but it also caused a moderate amount of leakage of blood back into his heart. Tests also revealed that Levi has a malformed and thickened bicuspid aortic valve instead of a three leaflet aortic valve. Levi spent six days in the NICU before coming home.

On June 24, 2011, at one year old, Levi had his first open heart surgery at Lucile Packard Children's Hospital at Stanford in CA. His bicuspid aortic valve was successfully repaired and his dilated aneurysmal ascending aorta was reduced. The surgeon also did a resection of fibromuscular subaortic membrane and supravalvular aortic valve stenosis.

Much sooner than expected, on March 21, 2014, Levi went in for his second open heart surgery to resect the severe subaortic stenosis which had aggressively developed in less than a year.

We hope that these repairs will give him many more years before another surgery is needed. The next surgery will most likely be a valve replacement. He is closely monitored by a cardiologist and currently has moderate aortic stenosis.

Other than his heart defect, Levi is THRIVING. He is strong, resilient and very active. He's doing great in school and loves biking, soccer, reading, and drawing. We love our little miracle dearly. He has already taught us so much about living in such a short amount of time.

To read more about Levi's story from the beginning, start here.