Life For Luke

Friday, April 26, 2013

18 Months

Luke turns 18 months tomorrow and he finally started walking last week! He looks like a drunken sailor and falls often. Walking has added a new dimension to his life and he quite enjoys getting around. Luke is almost always smiling and loves interacting with people. He is starting to sleep a lot better and I couldn't be more grateful. Some nights he only wakes up once! We don't know when the third surgery will be but my guess is at in 6-12 months. Until then Luke continues to amaze us in his abilities. Here are some pictures- Luke and his siblings in their BSU shirts, Luke eating some Nutella (I don't know who gave it to him), Luke climbing the bunk bed, and Luke at the park.

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.

Monday, October 29, 2012

Happy 1st Birthday!

I am so grateful that Luke has made it to his first birthday. And he is doing so well! He is crawling, standing with furniture, clapping, and enjoying life. He no longer has oxygen. He does continue with the Sildenafil (Viagra) around the clock. I am hoping to quit that medication soon. His only real problem- and it's a big on- is that Luke does not sleep! He wakes up 6 times on a good night and 12 plus on a bad night. Unfortunately the last 3 nights have been bad nights. Sometimes I think I am going insane:) I had no idea last year that Luke's life could be such a high quality. I feel that he has beat many of the odds. I am eternally grateful for modern medicine and talented physicians. I recognize that the future will hold more surgeries and other difficulties. But the today is better than I would have ever imagined! Happy Birthday little Luke. These pictures are of Luke with his new walker (he walks with it pretty well), eating his first cake ever (Sophie made it for him), and eating the wrapping paper rather than ripping it off (the siblings unwrapped for him).

Wednesday, September 5, 2012

Cardiology Appointment and Echocardiogram

Today I took Luke in for an echocardiogram (ultrasound of the heart) and cardiology appointment. Luke's oxygen saturations were 85% which is good. However the cardiologist said that his right ventricle is enlarged. This indicates high back pressures and insufficient pumping from the ventricle. Obviously the right ventricle is an insufficient pump for the body. So an enlarged right ventricle is normal for someone with HLHS. But Luke's is more engorged than it should be. So Luke has to continue with the Sildenafil (Viagra) and he has another echocardiogram in November. In the mean time he is doing well developmentally. He has 2 cute teeth, he started crawling last week, and he interacts well with his family and others. He is a blessing in our family that brings lots of joy and laughter. Here is a picture of Luke with his Grandpa Herb. I think Luke looks just like his grandpa. They sure enjoy each other.

Tuesday, August 7, 2012

9 Months Old

Wow, this summer has flown by and I have not posted anything about Luke for so long. He is doing well, better than I ever thought possible. He is off oxygen since early June. He has learned to roll over and sit up. He babbles, smiles, laughs, and eats like any normal baby. He is small (5% for height) and will always turn blue when ever he cries or otherwise exerts himself. But he is happy and I am grateful for every day I have him to hold. We went to the Oregon Coast the end of July for our first family vacation in a year. Luke was a miserable sleeper and traveler but he still enjoyed the trip. I'm including some pictures of his first vacation.

Sunday, May 27, 2012

6 Weeks Post Op

Tuesday marked the six week postoperative date for Luke's OHS. I wanted to update his progress thus far. First, he is still on oxygen. He only has 1/32 of a liter but has not weaned completely off it. So when at home Luke has a 15 foot tether and I try to get the house clean, make meals, and care for the kids while holding Luke and dragging the cord about. When we leave the house Luke has a 3 foot tether connected to an oxygen tank that I either push or carry about. It is not easy having a baby with all of the baby paraphernalia, but an infant with oxygen is awful! For Luke's first 7 months of life I have kept him home except for doctor visits and walks around the neighborhood. But Dr. Walker the cardiologist, said that at 6 weeks post-op we could take Luke out in public. It is great to feel like we can finally go out when needed. Already I've taken him to school for my daughter's science fair, a baby shower, and church. I still try and keep him away from the crowds and I sanitize his hands when ever someone touches them (I make sure they don't see me) but still we are free from the house! It is a great feeling. Luke has become a happy baby and I know he is not hurting anymore. It makes me so thankful that he can enjoy life. He is starting to take routine naps but he still wakes up frequently during the night. He also likes a quiet room and mommy to be able to fall asleep. I am just grateful that the other kids are old enough to accommodate his quirks. Before the Glenn I was advised to get a family picture taken in case that was the only we ever had. I had my talented friend Andra Shostead take the shots. I am including some pictures of Andra's work and also of Luke at home.

Wednesday, May 9, 2012

It has been just over four weeks since Luke's surgery. He is starting to share smiles and laughs again. He is trying to sit up and roll over. He is still on oxygen but is slowly weaning off. Medications are the biggest difficulties right now. Especially the one in the middle of the night.

Taylor, Luke, and I spend the days together while Mark is at work and the other kids are at school. We are enjoying the beautiful weather and finally getting outside. Those two boys are great buddies!

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!