Doug gave his parents a serious scare over the past couple of days. On Sunday night his monitor went off several times indicating that his heart rate was elevated, we would reset his machine and within a couple minutes it would alarm with the same code.
Doug's monitor is simply an apnea monitor. It doesn't tell us how fast his heart is or how long he rests between breaths, it simply alarms if he takes 30 or more seconds between breaths (Apnea) or his heart rate goes below 50 BPM or above 200BPM.
We thought that the machine may have been incorrect due to the fact that it was showing a memory full light and more than one alarm at a time. We simply put him in bed with us and decided to watch him closely on Monday.
On Monday he was acting normal. He rolled over, played and did everything he normally does. Sometime around 8:30PM Cathy noticed his chest was moving rapidly. We tried to get a pulse and had difficulty keeping up with it. We called my brother Dave who is a paramedic and He came right over. He found that his heart was racing at well over 200 BPM. It would then quickly slow to a normal rate of 100-110 BPM. This type of Heart beat is called a Supraventricular tachycardia (SVT). During an episode of SVT, the heart’s electrical system doesn't work right, causing the heart to beat very fast. SVT may start and end quickly, and you may not have symptoms. SVT becomes a problem when it happens often, lasts a long time, or causes symptoms. Doug had no symptoms that we could see. He didn't seem distressed or in pain and he continued to play and act normally throughout the episode.
We contacted the on call cardiologist at the Cleveland Clinic and he felt it was safe to have Doug stay at home for the time being. We where scheduled for a chest ex-ray and nurse visit to remove his stitches on Tuesday anyway. Needless to say I got no sleep on Monday night. We where both very worried about Doug. The Cardiologist simply said to have them give him an electrocardiogram (EKG, ECG).
Doug and I then spent the entire day Tuesday at the hospital. We had a chest ex-ray, an EKG, stitches removed and since the EKG was normal and heart problems are most often intermittent and hard to capture on an EKG which is only a snapshot of the hearts electrical system at the time f the EKG, we where sent to get a new monitor that could record an incident if we see it happen.
The nurse practitioner told me that Doug had experienced an episode of SVT while he was being operated on for his Co-Arctation of the Aorta repair almost two years ago. Dr. Mumtaz had noted it in his file and he has had no further episodes during the entire time he was monitored throughout his many hospital stays. Hopefully this has been an isolated incident and will not repeat itself. If it is a defect that he continues to have we hope to be able to get it recorded so it can be treated.
Other than the racing heart, Doug is looking great and is recovering from the surgery very well. He has his therapy sessions starting again and should be enrolled in two days a week daycare through the Cuyahoga County Board of Developmental Disabilities this fall. He automatically qualifies due to his diagnosis of CHARGE Syndrome. He has already gone to some of the play groups at the center in Westlake and we hope he is able to get into a class this fall. This is more of a group Physical Therapy session than a true daycare. They work with the children on gross motor skills and fine motor skills as well as play games.
Doug has several other follow up appointments over the next few weeks and his schedule will keep us very busy for at least the next month.
Cathy and I will keep everyone posted on his progress and I will post more pictures in the next couple of days.
Jim
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