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