Life For Luke

Friday, March 30, 2018

Luke Is In Kindergarten!

I'm not a great blogger when things are going well. But I have been reminded recently that many kids are not doing as well as Luke and success stories are important sources of information. You see, when we had Luke we had the choice to have surgeries or to let him pass naturally. We opted for the surgeries. It was a scary decision because I wanted Luke to have a quality life. At that time I would have appreciated hearing success stories of other kids with HLHS. There were so few... So here is an update on Luke's successes:

Luke started kindergarten last fall and is doing great. We have implemented a 504 plan where the school is aware of his diagnoses and precautions are taken. For example, at Halloween time the kids were to have an outside STEM pumpkin project. The kindergarten teacher opted to bring the project inside, mostly because of Luke. His PE teacher is also aware of his cardiac limitations and knows to let him go at his own pace. She does not notice a difference between him and other kindergarteners.

We moved to Nampa, Idaho on 20 acres. Luke was indoors for most of the cold winter. But now that it's in the 60s he and his brother are outside playing, chasing chickens, riding bikes, and just being little boys. He runs in spurts but not far and he walks a lot. I do carry him when we are in a hurry or if we have to go far. But is it him or me? I'm not quite sure.

Last January we went to Disneyland. Luke was able to go on the rides, but he is not a daredevil and so he and I did the more mild rides. He did stay in the stroller or his parents arms the 4 days we were at theme parks. We were able to get the disability pass at the parks which helped because I could push the stroller right up to the rides.

Luke is 6. He is happy. He is healthy. I love him and could not imagine a life void of his presence. I often forget he has HLHS. It is nice to imagine a healthy future for him. I anxiously watch new studies and trials for heart replacement. The future does look bright!

Easter Egg Hunt March 2018

Disneyland January 2017

Universal Studios January 2017

Dart Warz October 2017 (Luke loves Dart Warz!)

Oregon Coast July 2017

Eclipse 2017

Utah- hiking August 2017

Monday, May 23, 2016

It is May 2016 and Luke is doing fantastic! His last surgery was 15 months ago. Luke remembers parts of the surgery and says "I don't want to do that again." But he does not exhibit any phobias or anxieties. He has completed a year of preschool with no problems. People do not even realize that Luke has any health issues unless I say something. He is intelligent, independent, and happy. His only medication is a daily Aspirin. He brings me joy daily, loves others so wholeheartedly, and finds happiness wherever he goes. He is truly an angel on this earth! Here are some pictures of him.

Friday, June 5, 2015

June- 4 Months Post Fontan

Luke is fully recovered from his surgery. He has more energy than ever before! He has stopped being clingy and whining so often. He is playing with friends and going out and about with me. He is a true joy.

That being said, Luke does not have as the energy I hoped he would have. At least twice a day he lays down with a blanket, pillow, and bottle to just relax. I carry him often and he never tries to get out of the stroller, he rides in the shopping cart at the grocery store, and he is content to sit and play for hours. It is sweet behavior but not normal for a 3 year old boy. Some day he will be too heavy for me to carry so much. I worry about that day!

Sunday, March 1, 2015

OR Pictures- Very Graphic!

Warning- If you have a queazy stomach, do not view these photos. I just got a cd with photos of Luke during the operation, after his Fontan conduit was installed. I'm including a few pictures.

We went to the Boise Cardiologist this week for another transthorasic echocardiogram (chest ultra sound). The pressure through Luke's fenestration is decreased slightly, there is no fluid leakage, and things look pretty good. His oxygen saturations were about 95%, better than ever! Lasix was stopped so we can finally work on potty training!

Things are going better and better for Luke and all of us!

Saturday, February 21, 2015

At Home, 10 Days Post Op

We have been home for five days and things are starting to go back to normal!

We visited the cardiologist in a Boise yesterday and things looks pretty good. They did a transthorasic echocardiogram, EKG, and physical check up. In the echo the fenestration (small hole between the new vena cava conduit and the atrium) had a pressure gadiant of 7-8. This is not unexpected because of the elevated pressures in the heart prior to Fontan surgery. However it is higher than ideal (hoping for a 5). There was no fluids leaking around the heart, which is a good sign. His oxygen saturations were about 92% so the cardiologist opted to stop oxygen. He decreased the lasix to once a day and said to only give pain medications when Luke is in pain. It has been about 30 hours since the last pain medication dose and Luke is fine, even laughing.

We still cannot submerge his incision or chest tube sites. He is sometimes acting lethargic, asking for bed at nap time and night. But I hear it is a good 4 weeks before post Fontan kids start to show improvements from prior to surgery.

It is wonderful to be a family together again. Thank you for all of the wonderful meals, mom getting my kids off to school, support,, and everything.

Tuesday, February 17, 2015

We Are Home!

We got home about 9:30 last night. We had to wait for six hours at the hospital, after discharge, for oxygen to be set up. When we got home there was no oxygen on the doorstep so I had to make a few phone calls and bring the poor Norco RT out For a delivery late at night. But we made it and we are glad to be here.

Luke is super clingy and wants to be on my lap all the time. I though I would be getting lots done but I won't. It's all about him right now anyway.

Thank you everyone for your prayers, fasting, love and support. They are a great power and I know they have helped Luke through the first parts of this ordeal.

Sunday, February 15, 2015

4 Days Post Op

Luke had his last IV line pulled today. His chest X-ray showed less fluids. He walked around a lot. He had a bowel movement after 5 days of nothing. That has helped his stomach to hurt less. He hasn't had anything for pain since early in the morning. He hates the taste of the medicine so I think he is just baring the pain to avoid the medicine. But he hardly complains. My poor, tough boy.

He is still on 3/4 liter of oxygen. We will probably go home with oxygen. He had an Echocardiogram which showed continued elevated pressures in the atrium and pulmonary arteries. They are hopeful that the lower elevations of Boise will help with that. If not the cardiologist in Boise will prescribe Syldinafil (Viagra) again. That was a pain to give because it was three times a day and tastes awful.

We have been told we will go home tomorrow as long as the X-ray is clean. I hope it's true.

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!