Life For Luke: May 2012

Sunday, May 27, 2012

6 Weeks Post Op

Tuesday marked the six week postoperative date for Luke's OHS. I wanted to update his progress thus far. First, he is still on oxygen. He only has 1/32 of a liter but has not weaned completely off it. So when at home Luke has a 15 foot tether and I try to get the house clean, make meals, and care for the kids while holding Luke and dragging the cord about. When we leave the house Luke has a 3 foot tether connected to an oxygen tank that I either push or carry about. It is not easy having a baby with all of the baby paraphernalia, but an infant with oxygen is awful! For Luke's first 7 months of life I have kept him home except for doctor visits and walks around the neighborhood. But Dr. Walker the cardiologist, said that at 6 weeks post-op we could take Luke out in public. It is great to feel like we can finally go out when needed. Already I've taken him to school for my daughter's science fair, a baby shower, and church. I still try and keep him away from the crowds and I sanitize his hands when ever someone touches them (I make sure they don't see me) but still we are free from the house! It is a great feeling. Luke has become a happy baby and I know he is not hurting anymore. It makes me so thankful that he can enjoy life. He is starting to take routine naps but he still wakes up frequently during the night. He also likes a quiet room and mommy to be able to fall asleep. I am just grateful that the other kids are old enough to accommodate his quirks. Before the Glenn I was advised to get a family picture taken in case that was the only we ever had. I had my talented friend Andra Shostead take the shots. I am including some pictures of Andra's work and also of Luke at home.

Wednesday, May 9, 2012

It has been just over four weeks since Luke's surgery. He is starting to share smiles and laughs again. He is trying to sit up and roll over. He is still on oxygen but is slowly weaning off. Medications are the biggest difficulties right now. Especially the one in the middle of the night.

Taylor, Luke, and I spend the days together while Mark is at work and the other kids are at school. We are enjoying the beautiful weather and finally getting outside. Those two boys are great buddies!

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

Sunday, May 27, 2012

6 Weeks Post Op

Wednesday, May 9, 2012

Finally Home- 16 days post op

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