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!