Life For Luke: December 2012

Sunday, December 30, 2012

December 2012

December has been a great month for Luke. He had a sleep study December 20th at St. Luke's hospital. He and I had to stay the night while he was monitored with ECG leads, oxygen saturation checks, nasal and oral air flow monitors, arm and chest leads, and video. His head, arms, legs, chest, face, nose, and mouth had leads on them and he looked funny and felt awful. Needless to say, sleep did not happen often. I am awaiting the results to come in January. The only thing I do know is that he was desaturating to 75-73% every time he slept. I'm guessing he is going to have a tonsilectomy at some point. It will be nice to not be awakened every 2 hours every night of my life. Here are some pictures of Christmas.

Mark, Sophie and Luke.

Luke slept through the morning Christmas. I figured he and I would be happier if he could sleep in rather than join the other kids for present opening.

Two Photos of the Sleep Study.

Despite my best efforts, he was still cranky when he finally woke up.

Here he is, ripping some paper off. Taylor actually opened most of his presents. It was fun to have him home with us. It was actually a "normal" Christmas and we all enjoyed each other. I hope 2013 continues to be a great year.

1 comment:

Angee and ThomJanuary 1, 2013 at 7:22 PM
good normal times, I hope you can get some consistant sleep soon. I know I felt like I was cracking up, I would say 5 hours just 5 in a row hours and I can function.
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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

Sunday, December 30, 2012

December 2012

1 comment:

Finally Home- 16 days post op

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