Doug's First Check Up

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

Happy 4th of July

Doug enjoyed his 4th of July holiday with his first real bath in over a week. We had been giving him sponge baths since his surgery, but as of Sunday he was able to take a bath in the tub and we where able to keep his scar exposed to help it heal.

(Doug kicking in the tubby)

Douglas now has a large 5" long half moon shaped scar on his left shoulder blade from his Co-arctation repair a a large 5" scar on the center of his chest. Add the scar from his cut down on his leg and the one on his left arm and he has some real war wounds to be proud of.

He is getting better and better everyday and his personality is coming back more and more. He is certainly in some pain, but he is already back to rolling around and scooting around the house. He is amazing at how quickly he is recovering.

(His new Scars)

Bob and I went to the annual 4th of July parade. He was a bit stand offish at first, but he got much more into the parade when he found out how much candy they threw to the kids. He made out like a bandit.

(Bob and his bag of candy @ the parade)

Bob continues his partying ways as he spent all of the 4th at either the parade or at parties and is visiting his cousins Ben & Sam today.

As for now Doug says he will stay inside and enjoy the cool air. It is brutal hot out and he wants nothing to do with it.

Douglas is home!

(His personality is coming back to normal)

Douglas was released from the hospital on Thursday afternoon. His Cardiologist Dr. Prieto said that his Echo Cardiogram showed that all his repairs looked good. She sent us home wit a bunch of new instructions, some more drugs, and a list of several doctor appointments over the next several weeks. (Happy to be going home)

(He had to sleep it took so long to get discharged)

Once we got home, he reverted to the old Doug we know and love. He has already started rolling around and trying to crawl. He seems to have very little residual effect from the surgery. He is a little more prone to cry, and certainly has a little more pain, but he is happy and already started making his old noises.

Over the next six weeks we have to be especially careful when we pick up Doug and hold him. His breast bone will take the better part of two months to fully heal and picking him up incorrectly will not only cause pain but could injure him. We will not be able to giver him a bath until Sunday and even after that we can not use lotions on his scar until the scabs are completely gone.

(Home Again!)

Doug will take almost constant attention for the next few weeks, but anybody that would like to visit him can do so as long as you do not have a cold or other contagious disease. We will be keeping Douglas at home at lest until his first follow up appointment with his cardiologist in two weeks.

Thanks to everyone that has kept Doug in their prayers. He went throughout the surgery and post operation in an almost textbook fashion. We can not express the gratitude that we have for everyone that have been so kind and accommodating to us through Doug's surgery. Everybody that helped with Bob treated him great and allowed for Cathy or I to stay with Doug at all times. He had such a good time he didn't want to come home.

Thank you!

Jim