Update on Tylers Progress

When Tyler came out of surgery he had two IV lines one in his hand and one in his foot an arterial line that went into his artery to constantly monitor his arterial pressures and another IV in his neck, a catheter, two chest tubes to help drain fluids, and four pacing wires(wires that are connected to his heart which can be connected to an external pacemaker if he has problems maintaining a good rhythm, they have not had to use this) and he was on 4 liters of oxygen.
Medically speaking he is doing really well. His blood pressure, heart rate and all his numbers are right where they need to be. He was pretty uncomfortable on Monday night. He was getting morphine and Tylenol almost every hour to help with pain but one of the side effects of morphine is restlessness so he was waking up frequently. When I would sing to him and rub his head he would settle down but he could not sleep longer than a few minutes at a time. Poor kiddo was also extremely thirsty but was only allowed to have a few tiny sips of water at a time. Between the pain, hunger, thirst and just being plain scared of what was going on it was a really rough time for him. Needless to say, it was a long night for all of us.
Yesterday was better for him. He started getting morphine on an as needed basis only which seemed to be about every 7 to 8hrs and is getting Tylenol and a another slightly less narcotic pain medicine every four hours. We hope to be able to wean him off the morphine completely today. He started eating and drinking yesterday and can have as much as he wants, they took out his catheter and arterial line and he is down to one half liter of oxygen. He was off oxygen completely for a couple of hours but eventually had to go back on. I think it is just painful for him to take big deep breaths. Overall it was a good day yesterday with good progress.
Last night was a great night for him. He seemed comfortable snuggled up with his blanket and bear and he was able to sleep most of the night. The goal for today is to try and get him sitting up and moving around a little more. If everything continues to go this well we may get to go home on Monday.

Surgery Day

Giving praises to God tonight for a successful surgery. Thank you everyone who sent up prayers on Tylers behalf. Our family could not get through this without your prayers,love and support.
Surgery started at around 9:00AM today and at around 2:30 we got to speak with Dr. Jacobs. He said that everything went very well, he was able to repair his valve by making it smaller and shorten the cords that hold the valve closed, by doing this the valve went from having a 70% leak to 1%. Even though the repair went well, he decided it would be best not to proceed with the Fontan today. This means that there will be yet another open heart surgery next year for his Fontan.
So far recovery is going well. For the most part he seems comfortable they are giving morphine and Tylenol every couple of hours to help control his pain. His heart rate, blood pressure and all his numbers are right where they are supposed to be. The plan for tonight is to just keep him as comfortable as possible and let him rest. Asking for continued prayers for a smooth and speedy recovery.

Tyler's surgery plan

Tyler is scheduled to have heart surgery on Monday morning at All Children's Hospital in St. Petersburg. So, yesterday we made a trip over to All Childrens for Tylers pre-op testing. At this appointment they did some labwork, x-rays, EKG and had a physicians assistant check him out to make sure he is nice and healthy for surgery. Although we did not get to speak with our surgeon, we did speak with his nurse about what's going to happen during surgery.
HLHS is treated with a three stage surgery. Tyler has had the first two and is ready for the third stage called the Fontan. But there is another problem that Dr. Jacobs needs to address before doing the Fontan. One of his valves in his heart, the Tricuspid Valve, has a moderate leak and needs to be repaired. This problem is called Tricuspid regurgitation and basically means that when his right ventricle contracts to pump blood forward to his body, some blood leaks backward into the right atrium this decreases the amount of blood being pumped to his body.
This is not new information, we have known about his Tricuspid valve since before birth and knew that it would most likely need to be fixed at some point. Dr. Jacobs feels he needs to go ahead and address this now instead of in the future. So, the plan for this surgery is for the main focus to bo on repairing his Tricuspid Valve with the possibility of doing the Fontan as well. Surgery will start at 7AM monday morning.

Nathans 6th Birthday

We had such a great time celebrating Nathans birthday this year. Instead of having a big party we just had a small get together with my parents. We went to his favorite restaurant, Cracker Barrel and then cake and presents later. It was such a fun time especially since papa and nana were here to celebrate with us. Here are some pictures of his birthday.

This is Nathans Star Wars Cake. To all my creative cake decorating family and friends...this is the best that I can do...don't hate the cake. HA! He didn't care what the cake looked like, he was just excited about the Darth Vader and Luke Skywalker that was on it.

I cannot believe that my little boy is 6 years old already! His is growing up way to fast!

Cake + icecream + lot's of Star Wars presents =1 very happy birthday boy!

Build and Grow

Today Ben and Nathan had some father and son bonding time. Lowes has a kids workshop called "Build and Grow" every Saturday and they have a diffrent little project to make each week. This weeks project was a mini baseball game which of course Nathan was absoulutly thrilled about. He even got his very own Lowes workshop apron and after each project that you complete they give you a special patch that you can put on your apron. Too Cute!! I think that this might need to become a Saturday tradition:)... Oh, did I metion that it is free. How great is that! So after Build and Grow they had lunch at Cracker Barrel and then went to see the movie "How to Train Your Dragon." FUN DAY!!



Tyler and I had a fun day too. The weather was beautiful so we spent the majority of time outside. I pulled Tyler in the wagon and we went for a walk around the neighboorhood then a bike ride around the trail of the whole entire subdivision. Whew! I definatly got my exercise for the day and it must of wore Tyler out too because after that he took a loooong nap. It was a fun Saturday. I love spending time with my family.

Christmas piano recital

Last year, Nathans preschool started offering piano lessons as an after school activity for kids who were interested. At the time, I didnt sign him up because I really didnt think that he would like doing that. Oh boy was I wrong! One of his friends went to lessons and Nathan said he wanted to go too. I was extremely hesitant about this because first of all, we did not have a piano and he would need one to practice on. That would be a big expense and I was thinkingwhat if after a couple of months he decides he doesnt want to play after all? He seeemed like he was really interested in learning though, but still, he's only 5 and his interests seems to change daily. After a lot of praying and talking it over, we decided to let him try it. We thought that it would be a great extracuricular activity for him.
We found out that Mrs Debbie, a wonderful lady who plays piano for our church gives lessons. So he started going to Debbie's house for 1/2 hour every Tuesday. He's been going for 3 months now and says that he really likes learning but I have an awful hard time getting him to practice sometimes so we will see.
He had his very first piano recital this evening. Debbie had a few of her students along with parents over to play Christmas songs and have some cookies. I wasnt really sure how he would feel about playing in front of a group of people but he did really great! He played Jingle Bells. Most of the other kids were a little older but I think it was very encouraging for him to hear them play. We explained to him that if he keeps practicing he will be able to play like that too.
He's doing very well and I am extremely proud of him! I just hope he keeps it up!

Big Sigh of Relief

Several months ago, we met with a genetics doctor.while over in St. Petersburg. She wanted to meet with us to talk about our family history and have a look at Tyler to rule out any other issues that can sometimes go along with congenital heart defects. Sometimes kids with heart conditions have other issues as well, such as downs syndrome or cerebral palsy.
I have to admit, I did not want to go to this appointment because I thought that it was absolutely pointless. We were certain that Tyler did not have any other issues and this heart condition was just a random thing that happened. After all, no one else on either side of our family has heart problems.
So we spent a good hour or so filling out paper work and answering what seemed like 1000 questions about our family's medical history. She gave Tyler a good look over and reported that she did not see any signs of any other medical concerns and that there was no need to follow up with her. GREAT! But.. she did suggest that we have Nathan do an echo cardiogram just to rule out any minor defects that would indicate a genetic condition. WHAT!!!
I was stunned speechless! I was staring wide eyed open mouth at this dr because she just suggested that Nathan could possibly have some kind of heart defect! This thought had never ever crossed my mind! Not my Nathan who runs and plays and leads a perfectly normal life. Wouldn't we be able to tell if something was wrong?? She went on to explain that sometimes it could be something so minor that you wouldn't know without an echo.Uggg! after all we had been through with Tyler, just the thought of Nathan having anything heart related made me sick with fear.
So after several months of stalling, I finally made an appt for Nathan with our wonderful cardiologist. He did an EKG and an Echo and guess what? Nathan has a heart murmur. But Dr. Garcia called it an innocent murmur. He said that an innocent murmur is a noise caused by blood flow through the heart and is not a sign that something is wrong. Most children have an innocent murmur and it will most likely go away with age. They are commonly heard in children because their hearts are very close to their chest. Dr. Garicia felt confident that Nathan has a perfectly normal healthy heart.
What a big sigh of relief!