Life For Luke: January

Friday, January 27, 2012

January

Luke has been doing great this January. We stay indoors and avoid people to try and keep him healthy. So far it's worked! Sometimes I get cabin fever but mostly I enjoy the slower pace of life. Holding Luke, playing with and reading to Taylor, spending time as a family...it's all great.

We're looking at April for the second surgery- the Glenn. We go in next week for our second Syngergis shot (RSV vaccine). It only costs $1250 a shot and Luke gets it monthly. I am so grateful for insurance. We could never repay all of Luke's costs without it.

My friend Andrea Shosted donated her time and talents to photo Luke. Here are 2 of my favorites. One, you can see the depth in his eyes. I wonder what he's thinking, how much he probably knows. The second shows all Luke's scars but also portrays a relaxed and content baby. That's my Luke!

5 comments:

Holly EmersonJanuary 27, 2012 at 4:35 PM
Yay for updates! He looks so good, Mabry! He looks a lot like you. Sounds like you're doing great. I know what you mean about the cabin fever. I get excited nowadays when I get to go to the store!
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Angee and ThomJanuary 28, 2012 at 5:08 PM
Yeah for a good month! The Synagist shots carry quiet the shock factor. It is weight based so plan on double for next year! Severins last one was $4656. I too am so very thankful for Insurance. He is so beautiful!
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Robyn BairdJanuary 29, 2012 at 11:33 AM
He is beautiful! His scars look great already. I can totally relate on having to stay indoors but getting cabin fever. Hang in there. :)
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Melissa SnyderJanuary 29, 2012 at 8:10 PM
What a cute baby! He so very sweet. What a fighter and tough guy he is to have to endure what he has to go through. But with you as a mom, how could anything go wrong? I am so glad that he is doing well. Those pictures of him are really cute.
If you need anything let me know. Enjoy every moment! I have heard about those RSV shots. WOW, I didnt' know they were that pricey. Insurance is an aamzing thing to have. Can't afford to pay it but can't afford to live without it. So glad that you are all healthy and happy right now.
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JannaFebruary 1, 2012 at 2:36 PM
Dear little man. I'm so glad you've been able to keep him healthy.
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Hypoplastic Left Heart Syndrome

Hyoplastic Left Heart Syndrome (HLHS) is basically a medical condition where a person is born without the left ventricle. The left ventricle is the part of the heart that pumps blood to the rest of the body. Without the left ventricle life is not sustainable.

All newborns are born with a patent ductus arteriosus (PDA). This is a shunt that takes blood from the right ventricle to the aorta. The PDA is part of a neonate's physiology because blood does not need to go into a fetus' lungs. The blood is oxygenated via the mother's blood. When a baby is born and takes its first breath the PDA begins to close. It usually closes within a few days of birth but can last weeks.

A child born with HLHS will die when the PDA closes unless medical intervention is done. The newborn is first put on prostaglandins via IV to keep the PDA open. Surgery is then performed within a week of birth. It is a staged surgery that is considered paliative, meaning that adventually a heart transplant will be encessary.

The first surgery is called the Norwood and Sano or BT Shunt. Luke had the Sano. It involves openning the chest via the sternum, closing the PDA, creating a hole in the right ventricle and putting a shunt through the hole to the pulmonary arteries (these go to the lungs), seperating the atrial wall to make one large atrium, and sewing the pumonary artery and the aorta together to make a neoaorta. So in simple terms, the blood comes into the body to the single atrium, goes to the single ventricle, and then flow half to the lungs and half to the body.

The second surgery is called the Glenn. It is performed between 3 and 7 months of age. In this surgery the shunt (Sano) is removed (that's the one that goes from the ventricle to pulmonary arteries) and the superior vena cava (SVC) is connected to the pulmonary arteries. So then all blood from the head and arms goes directly to the lungs. This procedure lasts while the baby has a large head. But eventually he outgrows it.

The third surgery is performed between 2 1/2 and 4 years of age. It is called the Fontan. The Fontan involves connecting the inferior vena cave (IVC) to the SVC and all blood goes to the arteries. Now the child's circulation goes from the superior and inferior VC to the lungs, then to the single atrium, then to the single ventricle, and then out to the body. It provides adequate perfusion to sustain life but will not allow for vigerous exercise. Mild, yes, but limits will exist. The right ventricle is not as strong as the left ventricle so eventually it will give out. At this point transplant is the only option.

Now HLHS is the most severe heart disease one can have and still be born alive. 30 years ago no babies lived. Even 20 years ago they had poor statistics. Now 40-50% of children make it through all surgeries. Even then some have to have transplants in their youth. However, many are living into their mid 20s before they require a tranplant. Transplants can last uo to 20 years in adults (60 percent of heart transplants are successful after 6 years). And given time perhaps they can grow hearts from stem cells that will last forever!

Life For Luke

Before Surgery- no chest scars

Friday, January 27, 2012

January

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Finally Home- 16 days post op

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