Life For Luke: April 13-Finally Home!

Friday, April 13, 2012

April 13-Finally Home!

Yesterday at 11:30 the nurse practitioner came in and said that Luke was discharged. I packed, got meds from pharmacy, and had my discharge teaching. It was all quite busy and took a lot longer than I thought it should. I finally left at 3:00. I started driving home but only got to the Idaho boarder when I met Mark. He and his parents left at 4:00 but were able to drive straight through. I had stopped three times to comfort Luke. We got home at 10:00 p.m.

It is great to be home! Luke will be on oxygen, four different medications, and will have a return visit to SLC in two weeks. I can't bathe him and I can't remove his steri strips for another four days. For 4 1/2 weeks I need to scoop him when lifting. But he is on the mend, we are together as a family, and we are out of the hospital!

Thank you to everyone who has helped at the home front. Thank you for your prayers, kind words, and support. We love you all.

5 comments:

marnybApril 13, 2012 at 11:14 PM
You made it Mabes! I hope Luke's recovery continues to go so well. Love you!
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Angee and ThomApril 14, 2012 at 2:15 PM
so glad you are snuggling in at home! Enjoy
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Bonnie HynesApril 14, 2012 at 8:15 PM
Hooray Mabry! That has been our prayer: that he would just get home and be with you guys! He is probably so glad to be home, and you too I bet! Hopefully I'll see you soon!
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CandiceApril 15, 2012 at 9:15 AM
So happy for you and Luke to be home with your family. That's what it's all about.
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Melissa SnyderApril 17, 2012 at 9:46 AM
So thrilled you are all home. I have been away from the blogging world for a while and there was so much to catch up on. What a brave little guy he is, to have to go through all of that. You are a hero too Mabry! You are in our thoughts!
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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, April 13, 2012

April 13-Finally Home!

5 comments:

Finally Home- 16 days post op

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