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.

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).

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.

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.

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.

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!

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.

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.

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.

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!

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.

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.

April 8- This May Last a While

Last night was a little hard because Luke kept throwing up his milk and medicine. They finally put in an IV (the other two went bad) and gave him zofran (for nausea) and morphine. He hadn't slept much all day. With the medicines he was finally able to sleep well.

This morning his oxygen is still at 2 liters and his oxygen sats keep falling into the 60s while he is awake. So they are starting him on Viagra which is supposed to relax the pulmonary pressures and the lungs. He will be on it for about three months. They are going to do another sedated echocardiogram early Monday morning and hopefully find why his oxygen needs are so great. They are thinking possible colaterals (little self grown blood vessels) in the pulmonary arteries have grown and thus not enough blood is getting to the lungs or that he will just take a long time for his body to regulate blood flow. He may need to be on oxygen for 6-8 weeks.

We won't be leaving here as early as I thought. At least he doesn't seem to be in pain. I am including two pictures- one of Luke's face with the cuts he has given himself as a side effect of the narcotics and the other of his incision sight.

April 7- Slowly Getting Better

Today Luke had his two remaining chest tubes removed. Finally I got to hold him and nurse without any excess pain. We finally got a swing brought in too. At home Luke loves swings and so I'm hoping this one lets him sleep better.

We got woken up at 4:00 a.m. By a phlebotomist who turned on the lights and then called someone on his hospital phone and had a loud conversation in our room. Then I warned him that Luke is a hard poke and I only wanted him to draw blood if he felt very confident. He looked at me and walked out of the room. Nice guy. Luke ended up getting blood drawn by the IV team. Unfortunately that IV and the one they placed last night have gone bad. So we're in for another poke tonight.

Luke has itching from the narcotics but luckily Benadryl seems to help some. He is not sleeping much today. He keeps throwing up the lortab so now they're giving him only Tylenol and ibuprofen for pain. Fortunately he seems okay.

April 6th- Blood Draws

It is 6:00 a.m. And Luke just got a new IV on his head. The IV team took only 4 pokes before one finally worked. Yesterday he had 3 pokes. The poor kid is constantly getting some new ache. He just finished his bottle and then promptly threw some of it back up. At home he does not spit up much. I wonder if it's the narcotics causing the nausea or something else.

He is going downstairs for an x-ray right now. We are on the surgical floor. Luke got transferred about 4:30 yesterday. It is quieter here and I can stay in the room with him. But the nurse to patient ratio and the available doctors are not so high. I guess this is good because it means he is getting better but he sure seems pretty bad off to me.

The chest tubes only drained 8 ccs out of one tube last night. If the x-ray is clear than maybe some of these tubes can come out. Then I will be able to hold him.

April 5- Two Days Post Operative

This morning when Mark and I got to the hospital Lule looked pretty good. He had finally had a bowel movement and had received benadryl for his itchng. I think those two things made a huge difference. His eyes were more alert and he focused on our faces and almost smiled. He is having a hard time sleeping for any long period. He looks tired.

I just dropped Mark off at the car rental store and he has left to go home. The plan is to send us up to the surgical floor later this afternoon. They have a couch there so I can stay with Luke 24 hours a day. That will be nice. I am thinking maybe 5 more days and then maybe home. We'll have him on oxygen and medications but that should be it.

First Food, Clear Liquids

Here is a picture of Luke drinking one ounce of applejuice. He loved it and started screaming as soon as it was gone. So Mark gave him a pacifier and he went to town! He's never been a binky boy but maybe that will change.

April 4- 1 day post Glenn

Today we got to the hospital at 8:15 a.m. During the night they had extobate Luke and worked on getting his fluid overload down. He's a little less puffy than last night. He opens his eyes just a little but they look quite hazy. His head tosses from side ti side almost continually. I wish he could calm down. Right now the IV team is putting on another IV so we can start pulling some central lines.

He still had 2 chest tubes and a mediastinal tube, a RA, an IJ, an EJ, foley catheter, oxygen via nasal cannula, two peripheral IVs, and his Pacer internal leads and all his external monitors. His medications via IV are nitroprusside (blood pressure med), morphine, dexmeddetomidine (anesthesia med), and milrinone (heart med). He's just had an IV try but it failed. They're trying again. Oh, I love this little boy.

When my father in law had open heart surgery he said that when he first woke up he thought he would die. Later he wished he could die. I suspect that is how Luke is feeling now. Here are some pictures of the morning.

We get to visit!

So we just got into Luke's room. I'm including some pictures. He's pretty puffy. Dr. Burch says he's the largest hypoplast that he's ever operated on. They will extibate him early tomorrow morning. Until then he'll be kept sedated and drugged for pain.

They are done!

Dr. Burch just came and talked to us. He said Luke is done with surgery and in recovery. We will get to see him in about half an hour. He said there was a little occlusion of the left pulmonary artery but he fixed that. The surgery went without any major hiccups. He left the head of the Sano shunt on the right ventricle and pulmonary artery and sutured those closed rather than removing them and suturing the actual heart.

Luke is still intebated and will probably be so for 24 hours. He is on 50 percent oxygen. His sats are high 70s and low 80s. Luke's blood pressures are good. I don't know much more now. After we see him I'll write one more update for the day.

One hour left

I just went into the ICU and the nurses said they had just been told it will be one more hour. They also said that because he's so fat they had a harder time putting the lines in. That's why things are taking so long. I should know more in about two hours.

Here is a picture of Mark and Aunt Laura (Mark's sister) waiting. Laura just drove up from Logan to support us.

Waiting...

We were called about an hour ago and Luke is on the heart and lung by-pass machine. It took a long time to get him on (3 hours) and so I'm guessing there was lots of scar tissue. It is sad to think that my sons body is being kept cold, his lungs and heart are being bypassed by blood and only the brain is really getting any blood flow. It's an amazing machine invented around 1950 and Neil A. Maxwell was involved in it's creation. Scary but wonderful these modern techniques!

April3- cardiac cath and surgery

 Luke screaming and desaturating after the cardiac cath.

 Kissing Luke good-bye just before surgery.

Just Before the Cardiac Cath.

We checked Luke into day surgery at 6:00 this morning for a cardiac cathetization. The anesthesiologist intebated him and they did the procedure. They found a narrowing of the aorta and so they ballooned it open again. The procedure took about 3 hours. When he got to the ICUs floor he was crying, gagging, and his dry throat was so hoarse. Mark and I tried to comfort him but he just wanted to eat and they didn't want him to. So his oxygen saturations were very low. They were stable at 40 percent but once fell down to 25 percent. I was scared. A normal person has oxygensaturations close to 100 percent. So with it being so low I was thinking possible brain damage.

There were lots of physicians in and out of the room for about an hour. They gave a bolus of fluids and two doses of versed to calm him down. The sats did improve into the 60s and 70s when he was drugged up. But immediately fell as soon as they began to wear off. The surgeon dr. Burch was called. He looked at Luke, the results of his cardiac cath, and decided to do surgery. Within a half an hour Luke was whisked away.

Now we are in the waiting room. It's been about two hours and we haven't heard any news yet. I'll update as it comes. The picture is Luke after the cath but before surgery.

April 2 - pre-operative tests

This morning Mark and I left at 6:45 in the morning to drive to Salt Lake City. It was sad leaving the other 4 kids and they begged their dad to stay with them. Hopefully he'll go back in 3 days.

On the drive we stopped at the cheese factory in Burley to get the squeaky cheese Mark loves so much. Unfortunately they were out. Luke slept all but 2, 20 minute intervals. The first one was when I woke him up to eat (he couldn't eat after 9:39 in the morning because of the sedation). He was a super traveler!

We got to Primary Children's Hospital at 12:15 and went to register in. Then we went and had a chest x-ray, sedated echocardiogram (heart ultrasound), and cardiologist exam. This took only 6 hours to complete. Most of the time we had a crying Luke,desperately hungry and tired of bouncing parents. I think he got his Versed, Nubain, and other drug at 3:00. But he didn't get to eat again until 4:30 so he was very hungry.

We have to have Luke at the hospital by 6:00 a.m. Tomorrow for a cardiac catheterization. We're staying at my sister's house in Provo so we'll be leaving at about 4:45 a.m. To drive there. He will be admitted to the hospital for at least 6 hours and maybe over night. Then surgery on Wednesday.