Life For Luke: Onto the Floor and Out of the ICU 2/13/15

Friday, February 13, 2015

Onto the Floor and Out of the ICU 2/13/15

Luke was moved onto the floor today and out of the ICU, which is a major step to being discharged. They pulled the mediastinal chest tube. All medications except his lasix are now oral. His chest x-Ray from this morning was still cloudy so they are working on getting higher liquid outputs. Luke is eating pretty well. His itches have finally gone away. Yesterday he could barely sit still because he was itching his whole body as a side effect of the morphine. He hasn't needed Benadryl for 12 hours. He walked for the first time and did a great job of it.

We had a small scare this morning. The surgeon sent a specialist in to evaluate if Luke needed to go back into surgery and have a pacer installed. With his recent incision his chest would open easily and the scar tissue wouldn't be a factor. The specialist determined Luke does have SA Node dysfunction. But she believes that it will be a few years before he will need a pacer. This really frightens me because I was hoping that the Fontan would fix Luke until he needed a transplant in his 20s. Instead, he will probably have his chest opened again before he is 10. Oh how I wish I could undergo the operations for him!

Here are some pictures from the day.

2 comments:

Bonnie HynesFebruary 13, 2015 at 8:52 PM
I'm so glad he's doing well, and I'm sorry about the pace-maker news...he's a tough little guy. Still praying for him and you!
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UnknownApril 28, 2016 at 8:04 AM
Artikkel Veldig bra ! Det er den type informasjon som er ment å bli delt gjennom. Skam på søkemotorene for nå ikke å posisjonere dette innlegget høyere!
Kom over og diskutere med min side . Takk = ) Min blogg om dette temaet http://helsen.top/koarktasjon-hos-barn/
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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, February 13, 2015

Onto the Floor and Out of the ICU 2/13/15

2 comments:

Finally Home- 16 days post op

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