Life For Luke: April 8- This May Last a While

Sunday, April 8, 2012

April 8- This May Last a While

Last night was a little hard because Luke kept throwing up his milk and medicine. They finally put in an IV (the other two went bad) and gave him zofran (for nausea) and morphine. He hadn't slept much all day. With the medicines he was finally able to sleep well.

This morning his oxygen is still at 2 liters and his oxygen sats keep falling into the 60s while he is awake. So they are starting him on Viagra which is supposed to relax the pulmonary pressures and the lungs. He will be on it for about three months. They are going to do another sedated echocardiogram early Monday morning and hopefully find why his oxygen needs are so great. They are thinking possible colaterals (little self grown blood vessels) in the pulmonary arteries have grown and thus not enough blood is getting to the lungs or that he will just take a long time for his body to regulate blood flow. He may need to be on oxygen for 6-8 weeks.

We won't be leaving here as early as I thought. At least he doesn't seem to be in pain. I am including two pictures- one of Luke's face with the cuts he has given himself as a side effect of the narcotics and the other of his incision sight.

2 comments:

Angee and ThomApril 8, 2012 at 5:33 PM
Do you have a nail file? They probably won't let you cut his nails, but you can file them. Severin had to stay longer due to staph infection and he clawed his eyes out! His face looked worse then his chest incision. I hope you get home sooner then later.
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Robyn BairdApril 8, 2012 at 6:24 PM
Oh Mabry, I hate all the setbacks. One day they are great the next is a whole other story. Alexa threw everything up and it ended up being acid reflux which is a side effect from open heart surgery. It would make her heart rate drop it was so bad. She ended up having Fundoplication surgery. I have no idea if that is what is going on with Luke, but it wouldn't hurt to have him tested. Hang in there!! Praying for you and your family.
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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, April 8, 2012

April 8- This May Last a While

2 comments:

Finally Home- 16 days post op

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