So, like I've mentioned before in a couple of my previous posts, our appointment with the special cardiologist was today. We have known for some time that Lydon had some dysautonomia. He has always had problems maintaining his body temperature. It fluctuates as does his blood pressure, heart rate , appetite, energy level etc. But lately, we've noticed that with temperature changes or excercise, Lydon becomes short of breath and his lips turn blue. This obviously is not normal for a two year old. It was a very involved appointment. We arrived about 8:45 and left at 2:00!!! We were physically (and emotionally) exhausted! While we were there, Lydon had an EKG and an Echo done. He was such a trooper!! Poor guy was so worn out and happy to get a bottle he layed perfectly still for the echo without any sedative. So although it was exhuasting, we may have gotten some key clues for some of Lydon's issues. His EKG showed some variables that are common to mitochondrial disease. The ECHO showed a PFO. A PFO or Patent Foramen Ovale is a hole between the left and right atria. Everyone has this while in the womb but it is suppose to close shortly after birth. About 25% of the time, this hole doesnt close but it generally doesnt cause any problems or symptoms at all. However, in mito patients the stress that this puts on the body is much more profound and obvious. There is also a risk of oxygenated blood mixing with deoxygenated blood. This process called left to right shunting also increases the risk of a stroke. So because of all of Lydon's symptoms and the new findings on these tests run today, we brought Lydon home with a Holter monitor. This will monitor the activity of his heart for the next 48 hours. After this is complete, we will follow up with the doc and come up with a treatment plan. At that point, we will decide whether or not we will close the PFO. Needless to say, this appointment, like many of them lately, was a little overwhelming. Sometimes ignorance is bliss, sometimes knowledge is power.
For those of you who know us well and are intereted, Jonathan's MRI is scheduled for Friday morning. We are hoping this doesnt reveal anything worse than what we already know and that we will have results by Monday so that we can proceed with getting a biopsy done asap. Please pray that all of this will work out this way. Thanks so much!