Life For Luke

Saturday, April 21, 2012

Contemplation

I hope nobody minds but I would like to share some of my personal feelings about everything that has happened with Luke. First, it is heart wrenching to watch my sweet baby have health issues. I have wished I could give him my heart too many times to count. I have wondered why he should have to be born with such a difficult condition. I have cried and felt sorry for myself and for him.

Yet, I have had people tell me that they prayed for Luke as a family and that they had not prayed together before. Family, friends, acquaintances, and even strangers have told me that they have prayed and even fasted for Luke. I have received letters, meals, calls, emails, visits, money, gifts, and time freely given. I have been told by some that they have grown closer to God by watching Luke's struggles.

Through all of this I have grown closer to my Heavenly Father. I have seen the goodness of others and wanted to be a better person. I have come to realize that though Luke may struggle and though his life may prove short, he has worked miracles by bringing people closer to God. I believe that is why Heavely Father allows us to have trials. If in the end if we can know Him better, all our pains will be but a distant memory.

When things are hard I whisper to Luke, "this too shall pass" and hold true to a bright tomorrow.

Friday, April 20, 2012

April 20- Home For a Week

I have been home for a week now and it feels great! Things have been so busy that I have not updated Luke's progress lately. Some of you have been asking, so I'll try to put it all down.

First, Luke is on oxygen and I hate having to deal with the cords. He is tied to a 20 foot cord, tape covers his poor cheeks, and he always wants to suck on the nasal canula. It is cute but he keeps pulling it out of his nose and that's a big no no. He needs that oxygen. He is on medications around the clock and I especially hate the 4:30 a.m. feeding. At least Luke no longer fights the medications.

Sleep is my main issue lately. Luke will be happy, smiling, and laughing all day long. Then at nights he screams as if he is in terrible pain. I use the pacifier, bounce, pat, sing, and love him. But nothing seems to help except nursing. Last night I think he nursed for 3 hours straight and then every hour after that all night long. This has been going on for 3 nights and I am so tired and sore. I do not know what else to do because he cannot cry things out. I love him but sometimes I think this lack of sleep, being stuck at home, and lack of activity will put me in the loony bin.

I downloaded the pictures from my camera and wanted to share some interesting shots. I hope you enjoy our cute boy!

The IV medications Luke had right after surgery.

Luke right after the first cardiac catheterization. He is gagging from having his breathing tube pulled out. This was the time that sent him into emergency surgery.

Mark kissing Luke good-bye as he was being wheeled away to the operating table.

The monitor.

Luke at home, in his walker. He has no core strength and does not press down with his feet. So I am hoping this will help him start using those muscles. He seems happy, we will see if it works.

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.

Wednesday, April 11, 2012

Looking to The Future

Today was a low key day without many changes. Luke left the ICU and is back on surgical floor. He is at .75 liters of oxygen and saturations are usually low 80s. They want him on 1/2 liter of oxygen before he goes home but that could possibly happen tomorrow. Luke will probably be on oxygen 6-8 weeks after hospitalization. The oxygen and the Viagra will work together to decrease pulmonary pressures (Luke's are 3.1 and normal is 2) and bring more blood to the lungs. Adventually he should be able to regulate his oxygen sats by himself.

My sister-in-law Laura spent the day with me. Also a new friend Danean Bone and her sweet son Cashton came to visit. Cashton will be 10 years old soon. He has HLHS just like Luke. Cashton plays soccer and karate, is energetic and bright, and gives me great hopes of a wonderful future for Luke. My picture is of the two boys. Quite the handsome pair!

Tuesday, April 10, 2012

Sucking Fingers Again

Luke sucked his fingers as he woke up from anesthesia. He is usually a finger lover and hasn't been able to access them much. It is good to see his normal behaviors returning.

Cardiac Catheterization

Luke just got out of his cardiac catheterization. It took about 1 1/2 hours. He was intebated and given fentynal and gas to sleep. In the procedure they found no problems anatomically. The aorta that had been ballooned last week was nice and large. The only problem was the pulmonary arteries pressures were high. So the cardiologist thinks it will just take some sildinafil (Viagra), oxygen, and time to fix things. Luke may be on oxygen for weeks or months.

Luke is still asleep fom the procedure. He is holding my finger and sucking his pacifier. He is in the ICU again. We will know more what the game plan for him is tomorrow. I'm still hoping to go home by the weekend.

Monday, April 9, 2012

April 9- Sedated Echocardiogram

Luke is still on 1.5 liters of oxygen. This is not normal 7 days post-Glenn. They did a sedated echocardiogram today to try and find out if all blood flows are going as they should. Luke coud not eat 3 1/2 hours before the procedure. They gave Valium and ketamine to sedate Luke. He was fidgety throughout the whole procedure but he kept desaturating so they could not give him any more sedatives. Consequently they did not get a good echo.

Because the echo was inconclusive the surgeon has ordered a cardiac catheterization for tomorrow. This involves sedation and intubation. After the last cardiac cath Luke kept desaturating so much that they did emergency surgery. Also this will be five sedations in eight days. What a drug overload!

I had to stop typing for a while because Luke just threw up. He threw up all the milk and then yellow bile. I had a huge pile in my lap and had to shower and change. He has zofran going into the IV right now. He just fell asleep but they are going to come do a blood draw in about thirty minutes. This morning his blood magnesium, potassium, calcium, and creatinine levels were low. Depending on the lab results they will give electrolyte replacements and some packed red blood cells.

I'm probably going to be here all week.

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!