Kenten 7-26-10

We received the letter today explaining Kenten's procedure. I thought I would share it. Several of you have been curious what it is that is going to be done.

During the Procedure:
The anesthesiologist will give medications through a mask or IV line, and your child will drift off to sleep. After your child is asleep, three to five long catheters are passed through the skin into blood vessels, usually in both groins and the right side of the neck, and gently guided into the heart. The heart's electrical system is then "mapped" by placing the catheters in specific locations in the heart and by pacing the heart. The "mapping" is the electrophysiology study. When an extra pathway or irritable site is located, low frequency radio waves are used to destroy the pathway or irritable site. This part of the procedure is the Radiofrequency Ablation. The ablation is done to cure your child of his or hear fast heart rate.

After the Procedure:
Your child will be on bed rest for five hours to allow the catheter insertion sites to hseal and heal. It will be important that your child not bear down, cough excessively, vomit, or push himself up in bed or stand. (This will be the tough part. If you know Kenten, you understand.) These actions can cause internal pressure that could cause the catheter sites to bleed. Your child will have a large, pressure bandage on each groin when he wakes up from the procedure. These will stay in place for five hours. They will be removed before your child is discharged. Your child will be able to read, watch TV or videos or play Nintendo while on bed rest. (I'm thinking new DS games or movies will be an excellent Christmas gift.) Most patients will be discharged to go home later the same day or in the early evening after the procedure. Should the procedure run late, or should there be any delay in routine recovery, he may need to stay overnight for observation.

Risks:
The risks of this procedure are very low. The risks of Cardiac Catheterization include: loss of circulation to a leg, blood clots (which could result in a stroke), bleeding, infection, perforation through a blood vessel or heart wall. The risks of an Electrophysiology Study include the risk of an abnormal rhythm occurring or an adverse reaction to antiarryhythmic medications. The risk of Radiofrequency Ablation includes possible damage to the normal conduction system. (Lots of things to pray about here.)

If you haven't been kept up on what all is going on, you can look back through my notes. Everything pertaining to these events are labeled with Kenten's name and a date. You'll want to go back to November 2009.

Kenten 7-8-10

I FINALLY got to talk to the scheduling lady from Children's Mercy. I scheduled Kenten's procedure for Tuesday, December 28. We will leave Wichita Monday morning. He'll have preadmission testing at the Cardiac Clinic on Monday afternoon. He is having a Radio Frequency Ablation and an Electrophysiology Study.

They will map the electrical workings of his heart and hopefully correct what was causing the SVT episode that happened November 2009. Since then, he has not had another episode that we are aware of. The thought is to fix the cause of it now. If we wait until we see more episodes, it becomes a necessity. Right now the procedure is an elective procedure. Once it is done, we're not supposed to have to worry about it happening again. I'm sure we'll always worry though.

There is a chance that what caused the SVT will not be able to be fixed until he is older. We won't know for sure until the EP study is done.

We will be able to stay at the Ronald McDonald house while we are in KC. We've been talking about using this as an opportunity to have a small family vacation. I found out our insurance will cover 90% of the procedure, leaving us to pay the remaining 10%. The insurance will pay 100% once we've paid $2000. I am especially relieved by this. I was having nightmares that this would cost us $10,000 or even more.

We'll keep you posted as things get closer.

Kenten's KC appointment 12-17-09

We visited with Dr. Hulse in KC today. The only test run today was an EKG. We talked in great length with Dr. Hulse and made the decision to go ahead with the procedure to correct Kenten's heart. We will schedule the procedure sometime after July 1, 2010 and before the school year begins. As it turns out, his diagnosis is not as scary as we thought. It is not life threatening. Kenten's heart may occasionally beat faster than normal, but the doctor gave us some things to do in case he has another episode. He is able to act as a normal little boy without any restrictions.

The procedure is very simple. We will be in KC no more than three days. The first day will be to visit with the anesthesiologist. The second day will be the procedure. We will be able to go home that day if we want to, or we can wait and go home on the third day. The only issue he will have after the procedure is tenderness and irritation at the catheter site in his legs.

Thank you so much for all of your prayers. Knowing there are so many people who have lifted our family in prayers has been a huge comfort!

We have an appointment!

I spoke with Dr. Hulse's office this afternoon! Dr. Hulse is the Pediatric Cardiologist we will see at Children's Mercy Hospital in Kansas City. We have an appointment for Thursday, December 17. As far as I can tell, Kenten will not have any invasive procedures done at that time. We will be visiting with Dr. Hulse and he will do another Echo and EKG. There may be other tests as well. At this appointment we should find out more information as to what caused Kenten's heart to beat so fast and determine a course of treatment. The appointment is scheduled for the afternoon and I was told to expect it to last 2 hours, so we will not be staying in KC longer than just the day.

For those of you that are in town and will see Kenten, I would ask that you not say anything about the trip to KC. We haven't talked to him about going to see another doctor. Kenten is one that will worry about what they might do. We will talk with Kenten when we feel it is an appropriate time. Thank you for understanding.

More waiting

The Cardiologist's office in Wichita called this morning to tell us the Cardiologist in KC will be calling us either today or Monday to schedule an appointment. The nurse couldn't tell me anything other than to expect a phone call. We're assuming that means they will be going through with the procedure to fix Kenten's heart.

I'll post more when we know more.

Kenten's Doctor's Appointment 11/24/09

Today we visited with the Cardiologist. He diagnosed Kenten with AV Node Reentry Tachycardia. Here is a link with a really good description of what it is. http://abcnews.go.com/Health/HeartRhythmScreening/story?id=5244744

Dr. Allen, the Cardiologist in Wichita, is waiting to hear back from the Cardiologist in KC before we make a decision on a treatment. There are two things he is considering. One is the procedure described at the above website. The other is to change his medicine and monitor him more closely. At the moment Branden and I are leaning towards the procedure. We still need to visit with the doctor to have our questions answered. We feel, with the information we've been given, that it will benefit Kenten in the long run to have this procedure done rather than to just monitor him.

Dr. Allen did say that all of the tests showed his heart had developed normally and was "hooked up" properly. While wearing the Halter Monitor the only thing that was abnormal was one beat that was out of place, but it was nothing to worry about.

Kenten's Doctor's Appointment 11/20/09

We went to the Cardiologist's office this morning. The nurse put the monitor on him. He will wear it until 11:30 on Saturday. Branden will take it off at that time. Then on Monday Branden will take it back to the Cardiologist's office. They will read the information and make a diagnosis. Kenten will go back to the Cardiologist on Tuesday morning to have an Echo and EKG done. The nurse said we will know everything on Tuesday. I'll update more then.

Kenten's 24 hour Halter Monitor

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