Life For Luke: 2011

Monday, December 26, 2011

Christmas

Luke has been home for 2 weeks! He is gaining weight and so far staying healthy. We had a wonderful Christmas. Luke sure looked cute in his Christmas reindeer outfit.

Tuesday, December 6, 2011

Going Home

We get to go home next Sunday night. We are so excited to be together again as a family. It has been wonderful being in Boise this time so we can be with all of the kids.

Friday, December 2, 2011

Luke had surgery at Primary Children's hospital on November 4th. He recovered well and was sent home on November 18th with a feeding tube and oxygen. We were home only 4 days when he started to stool blood. We rushed to the ER at 1:00 a.m. Thanksgiving morning. We only stayed at the hospital 13 hours and the blood was dissipating and his KUB (chest x-ray) and lab work looked good. So we went home, had Thanksgiving dinner at my mom's, and went to bed.

The next morning we were decorating the Christmas tree when the hospitalist called and let us know that Luke's blood culture was positive for a staph infection. I took Luke back to St. Luke's in Boise at 11:00 a.m. Luckily we caught the infection before it became too severe. If it had not been caught it would have likely infected Luke's new heart hardware (stitches and shunt) and required a repeat fixing surgery. We feel so blessed that the bloody stools happened and thus the blood cultures were taken.

With this third hospitalization they found that Luke's left renal vein to his liver had had a clot that had dissolved but that was where the bacteria had colonized. Luckily the liver was not damaged and the clot was gone. We are now on day 5 of antibiotics and have 9 more days to go. Luke is off his oxygen and eating with a bottle- no feeding tube! We can't wait to go home again and hope to stay there.

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

Monday, December 26, 2011

Christmas

Tuesday, December 6, 2011

Going Home

Friday, December 2, 2011

Luke's Journey

Finally Home- 16 days post op

About Me

Thanksgiving Day

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