Children's Hospital memories

One of the first memories that I have of my heart surgeries was when one of my doctors had paid a visit to me in my room the night before my 2nd operation. It was later in the evening, so my parents had already went to the hotel to get some sleep and Dr. King came in to listen to my heart and listen for the leak that they were going to repair. I was only 5, so I was a little scared to be seen by a doctor without my parents being there, but once we started with the examination that all went away. Rather than start out by listening to my heart he gave his stethascope to me and let me listen to his heart as a way to break the ice between us. One of the nurses had taken a photograph of that moment which later became one of the posters for Children's Hospital in Seattle.

Another memory that I have which is not so easy to forget is when some of the phlembologist's came in to draw blood. This was the day that I would never fear needle's again. I had just came back to my room after doing some routine x-rays and echocardiogram when I noticed that the food staff had brought me a tray of dinner. Just about them 5 phlembologist's walk in and tell me that they need to take some blood. At that time all of them started to draw vials of blood from every area on my body. They must have poked me at least 40 different times, and after that I wasn't too hungery anymore.

These are just a few of my first memories that I have when first starting my journey with heart surgery. More memories to come later. Until next time.

Diagnosis

Being diagnosed with a heart condition, or any other condition for that matter can be a very scary and stressfull time not only for your child, but also you as a parent. There are so many questions that you will ask your self like, why did this happen to my child, is there anything that we could have done to prevent this, and was there anything that happened during pregnancy that could of caused this. Unfortunatly I was too young to remember being diagnosed with TOF, so I will have to rely on my parents point of view on this one.

One thing that you need to do is remain as calm and collective as possible so the stress and the worry is not displayed to your child. If not, you may be lieing in a bed next to them because your blood pressure has spiked and you fainted. Another important thing that you need to do is ask as many questions to the doctors, nurses, respitory therapists, or whoever is in the room examining your child. If you think of a question while no one is there just put it down on a piece of paper so that you can ask it later.

Sometimes doctors forget they are talking to parents rather than their colleages and tend to forget to explain things in terms that everyday people can understand. They may be explaining things and throw out the term cardiac hypertrophy (thickness of the heart muscle), and next thing you know they have left the room and your sitting there wondering what just happened. This is where the questions part comes in. Try to learn as much about your childs condition as possible like what causes it, how can it be repaired (major/ minor surgery), what will happen if it is left untreated. While asking your questions ask them in a way that will break down the condition from every aspect and it will be easiert to grasp and understand.

One experience I did have with being diagnoses came later in my life when I had been diagnosed with secondary pulmonary hypertension. It was discovered during my last heart surgery that my pulmonary pressures were very high and were going to have to be treated with medication. To start me on these meds they were going to do it intraveniously and in the controled enviroment of the hospital just in case my body rejected the high doses of medications that I was being given. Here is where it started to get a little scary. I was sitting in my hospital bed after the heart cath I had to insert the lines into my artery for distrabution of the meds and a nurse starts to bring in all these syringes filled with various medications. Im not joking there were about 20 of them sitting next to my bed. About that time my doctor, Dr. Clarke, had came in to check up on me and see how I was doing, so I asked what are all these for? He starts by telling my that those are my gurdian angel's and those are put there to ward off any bad things that may occur, and I am like what's going to happen im in a hospital surrounded by doctors and nurses. Thats when he starts to explain the different things that can happen during this like nothing will happen at all, or you may get light headed, and then he's like oh and you could possibly die. I just sat there with my mouth open as he walked out of the room. That was one of the only times that I ever had uncontrolable emotions, because I had started to cry without every feeling any emotion. Needless to say I am still here to tell you about this today. Dr. Clarke needed to work on his bedside manner thats for sure. More to come on him later.

The main things to do are to be as calm and cool as possible during these times, and don't let the doc leave the room until you fully understand what they are talking about. Until next time.

Thanks,

Luke

A little history about myself

I was raised in the small town of Arlington, Washington with a very caring family that has always been there for me, even before I had ever been born. It was discovered at birth that there was a problem with me since I was blue due to lack of oxygen. The doctors had placed me in a incubator for 12 hours to see if that would help get oxygen into my body and also conducted a physical examination at which time they could hear that I had a hole in my heart that would not repair itself. It was at that time the doctors suggested to my parents to take me to the University of Washington.

At the age of 3 weeks I had my first doctor appointment with Dr. Herndon and his cardiac team. One week later I was having my first heart cath at the age of 1 month, and at that time I was diagnosed with Tetrology of Fallot. After my initial diagnosis the doctors at UW continued to monitor my condition on a yearly basis and also tried steroid treatments to see if that would close the hole in my heart. To no avail, that did not work. One of the main requirements for a patient to be a candidate for open heart surgery was that they had to weigh a minimum of 50 lbs. It was not until I was 3 years old that I qualified for open heart surgery.

I had the TOF repaired during my first surgery, and all had seemed going well until the age of 5 when the doctors discovered an aneurysm in my heart which required repair. The aneurysm was repaired and all seemed to go well over the next couple of years, and I seemed to be a normal little boy. At the age of 7 I had went in for a routine checkup when the doctors discovered that my pulmonary valve was leaking. Due to the amount that it was leaking the doctors were surprised to hear that I was attending school full time. It was at this time I had my first valve replacement. The valve that the doctors used was a pulmonary pig valve. The reason that pig valves where used was because the anatomy of a human heart and a pig heart are very similar, and makes valve placement easier. The life of the valve was at best 5 years before it would wear out and have to be replaced.

By the time I had turned 12 I was in need of another valve to replace the previous one that had been implanted. Its hard to do at that age since all I was use to doing was running around all day from dawn to dusk out in the woods behind my parents place. When it did come time for the surgery another pig valve was used to replace the failed one. This valve lasted until the age of 17, at which time it was replaced with a human donor aortic valve. The reason the doctors decided to use the aortic valve is because it is stronger than the pulmonary valve, and hoped that would add longevity to this valve and not have to be replaced so soon. When I asked the doctors how much longer it lasted they had stated up to 10 years longer than the pig valve. Well it was replaced when I was 17 and I still have it to this day.

Due to the time spent on ventilators I had reconstructive throat surgery at the age of 22. This was done to make it easier to breathe, but one of the results from that is I now have a voice like Sam Elliot or Wolf Man Jack. It has its benefits though.

The latest procedures that I have been through is two cardiac inversions and one cardiac ablation. These procedures were done to correct a heart arrhythmia I had. The first inversion worked for about four years, and the second only lasted 6 months. The ablation is still holding strong to this day.

I am doing this blog in hopes that it will help parents get a better understanding of what their child may be going through, and to give insight from my own experiences.

Thank you,

Luke