August 13, 2013

Five years ago today our lives changed forever. Our beautiful son Douglas was born and a twenty five month odyssey of hope, joy, fear and pain began.  Douglas spent months in the Cleveland Clinic Children’s Hospital. He was diagnosed with CHARGE Syndrome and he had thirteen major surgeries including two heart surgeries and dozens of procedures. Our journey with Douglas culminated with the heart break of October 1, 2010 when Douglas left us while we held him in our arms.

I can remember our daily routine of affixing his feeding tube, putting his hearing aids in and doing his physical therapy.  I can remember how being with Doug in public was like being with a Rock Star. Perfect strangers would stop us simply to talk to Doug. He had an aura about him. He attracted people to him as if he were a magnet.  He had a gentle spirit and was always smiling.

When we would go to the Cleveland Clinic for his doctor appointments we would be stopped in the hallway every time by someone who knew Doug or had him as a patient.  It was surreal how well known and how popular this small child was. He was inspirational to so many people.

I think about Douglas every day. I talk to him and wish that I could hold him one more time.  I often think about what he would be like and how much he would love his younger brothers.  I always tell people that I have FIVE children, not four.  I have four at home and one in heaven.

It was a privilege to have been chosen by God to be Doug’s parents. We learned so much about ourselves and the truly important things in life. Douglas made Catherine and I better parents. He made us better people. He brought us closer and he brought our entire family closer.  We are closer to our parents, siblings, aunts and uncles, cousins, nieces and nephews BECAUSE of Douglas.

I want people to know that I have a son named Doug. He wasn’t a fantasy and he isn’t dead. He lives in our hearts and his soul waits for his mother and me in heaven.  

Happy fifth Birthday Doug! I love you and miss you every day!

Love, Dad

Life Without Doug

Friday: October 29, 2010

I just looked at the clock and realized that it was 11:10pm. It was exactly four weeks, 28 days ago that Douglas died.

I am having a tough time with the death of Doug as I am sure would be the case with anyone who loses a child. Cathy and I cry frequently about Douglas. We remain heartbroken. We miss him terribly. It is painful and it just sucks.

Bob only talks about Doug reluctantly. He is sad about his brother, he is starting to understand that he is not at the hospital, he has even says that Doug is dead.

We went to the auto shop today to get the oil changed in my car. The shop is across the street from the back entrance to the graveyard where Doug is buried. Bob and I went to see his grave, I have gone several times in the last four weeks. I stop by almost daily. While we where walking around the cemetery Bob said that he missed Doug. He said that Halloween was coming and 'Doug won't be able to get dressed up and go trick or treating because he got dead.' whenever I talk to Bob about Doug he says that he doesn't want to talk about it.

This is one of the few times he would say anything about Doug. He won't admit to missing him, but he certainly does. He has asked for a few pictures of Doug to be put in his room. He specifically asked for a picture to be put above his bed so "I can see him everyday."

This summer Grandpa Drinko and I took the boys to the Memphis Kiddie Park. Doug got to ride the rides for the first time. Of course his big brother was there to protect him. He kept his arm around him and made sure he had a good time. When Grandpa asked why he had his arm around Doug so tightly, Bob said "Cause I don't want him to fall out and get hurt. He is my little brother."

Bob has been very sweet lately. Just yesterday I asked him for a kiss, he said "I will give you a hug because I know you miss Dougie." What a great kid.

Cathy has been very busy at work and I have tried to be busy at home. We are going through all things we have stored over the years and are giving away allot of stuff. We donated Doug's hearing aides to the Regional Infant Hearing Program. They will be used for children in the area that can not afford them, they already are in a good home. we donated all his food and feeding supplies to people who could use them.

We have painted my brother David's home and I had to dig a trench 18" deep and 30'long at my house to put new electric service in our garage. I ran into a large stone about 2' x 2' and 10" deep. It had to weigh a couple hundred pounds. We had to bust it up with a heavy sledge hammer in order to remove it.

We took Bob with his cousins to the Pumpkin Patch and went through the corn maze and took a hay ride. We have tried to keep busy and intend on visiting Doug's cousins Cooper and Jackson in Nashville next week.

We know that it will take a long time to get over Douglas. In many ways I don't ever want to get over Doug. He was simply a pleasure to be around. Even all the worries and surgeries and pain that he put us through was nothing when compared to the joy and pleasure that he gave simply by being the sweet boy he was. Regardless of the pain he was in , he still was always pleasant.

We continue to miss Douglas every day. It is getting easier in some ways, but harder in others. We hope and pray to see him again. We miss him and love him always.

Jim

Douglas is Laid to Rest

Catherine and I laid our beloved son Douglas to rest today with all the dignity that we could muster. We are distraught but determined none-the-less to go on. Through our sorrow and tears we found that we had the best family, friends, co-workers and acquaintances than anybody could ever hope to have.

We had a viewing for Doug on Tuesday and we where humbled by the tremendous amount of people who came to offer their condolences and to honor the life of our beautiful boy. Hundreds of well wishers stop by, all of whom commented on how much that Douglas had affected their lives for the positive. We are so very grateful to everyone that came to show their support. It brought us the strength that we needed to do what we had to do for Douglas.

The Funeral Mass was beautiful. There where hundreds in attendance and it was a great testament to how much Doug's short life affected so many in such a positive way. Fr. Duke & Fr. Cregan Co-Celebrated his mass and all of Doug's aunts, uncles, and cousins participated in the mass. Doug's Uncle Peter and his Godfather Uncle Richard delivered eulogies that where both heartbreaking and uplifting.They where exceptional statements of their love for Doug and the love that all in attendance have for Doug. Their words went a long way in helping to heal our broken hearts.

Doug has a very nice plot under a lovely tree at the Alger Cemetery. We requested a spot in the shade because Doug never liked the Sun. The cemetery is in the neighborhood and we intend to walk over to visit his grave sight often.

We where shocked at the amount of people who attended the graveside ceremony as the cars filled almost all the driveways and trails in the cemetery. Once again we where pleased and humbled by the love and support of everyone in attendance.

Hundreds of people showed up to Grandpa & Grandma Roth's house for a luncheon and get together after the services and it was wonderful to see.

It took a long time for Cathy, Bob & I to get accustomed to having Douglas around.We know it will take even longer to get used to not having him with us. We miss him terribly and will do so every day of our lives. We hope and pray that we get to see him in heaven when we pass from this earth. Until them we have our own little saint that can look over us, and pray for us.

Cathy and I want to thank everyone that have shown their love and support for us. We could not be more grateful.

Thank you,

Jim Roth

This is how we wish to remember Douglas. He was our happy little CHARGER who gave us much more than we could ever give to him.

Funeral Arrangements

Douglas will have a viewing from 2pm - 8pm Tuesday October 5, 2010 @ The Donlon Funeral Home 15408 Triskett Rd. Cleveland, OH 44111.

There will be a funeral Mass Wednesday October 6, 2010 @ 1pm at Our Lady of the Angels Catholic Church 3644 Rocky River Dr. Cleveland, OH 44111.

Douglas will be interred immediately following the Mass at The Alger Cemetary 16701 Bradgate Ave. Cleveland, OH 44111.





Catherine and I would like everyone to come to celebrate the life of Douglas. He was an amazing boy and an angel sent from God.

Douglas touched many people in his short life. Everyone that met him fell in love with him and he will be missed by all who knew him.

Douglas C. Roth Has Passed

Douglas Charles Roth died at The Cleveland Clinic Main Campus 11:10pm Friday October 1, 2010. He was surrounded by his Aunts and Uncles, Grandpa and Grandma and his Parents Catherine and James Roth. He was two years and one month old.

Wednesday he vomited his second feeding and was very lethargic. We took him into the pediatrician on Wednesday at 4:40 pm and he had good vital signs but a mild fever of 100deg. The doctor and I decided that it would be best to have him at the Clinic and Cathy and I took him in to the Main Campus at 7pm.

He was placed in the Pediatric Unit and they where finally able to get a line in him after several dozen attempts at finding a vein. He was hydrated and seemed to be doing fine. Sometime early Thursday morning he developed a rapid heart beat and a poor heart rhythm. He was transferred to the PICU and they administered Drugs and where unable to control his heart. He crashed around 3pm Thursday during a procedure to put in a groin line to have better access for drugs and fluids. The doctors did CPR compressions on him for around an hour and where left no choice but to put him on an ECMO Heart Bypass machine.

They where able to stabilize him, but his heart would not respond to the drugs and remained in a bad rhythm. They attempted to fix the problem with a catheterization but where unsuccessful.

His little body couldn't continue to fight. We kept him on the Heart Lung machine long enough for all his aunts and uncles to come and see him one last time. After his Uncle Peter arrived from Pittsburgh and saw him we waited another 30 minutes and Cathy and I held him as they turned off the life support machines. He passed very peacefully.

We are very appreciative to everyone for all the love and support that we received during Doug's short life. He was the light of our lives and the best thing that ever happened to us. He made us better parents, better friends, better siblings, better spouses and better people. He will be truly missed every day of our lives and our love for him will never fade.

We are making arrangements for his wake and funeral Saturday. We will have a viewing and services at Donlon Funeral Home on Triskett Rd. in Cleveland and a funeral mass at Our Lady of the Angels Church on Rocky River Dr. either Wednesday or Thursday. We will let everyone know when and where and everyone is invited.

Douglas touched many people in his short life everyone that met him fell in love with him and he will be missed by all who knew him.

Thank you,

Jim & Cathy Roth

Update on Doug's Heart

Doug had another appointment with Dr. Prieto his cardiologist. She has been concerned about his heart rhythm. When they have him on an EKG he has some quick heart beats, since he has been on the Beta Blocker it has been less often, yet she wanted to get a full day of heart history on him. She sent him home with a full monitor that will record his heart information for a full 24 hours. He now has three monitors.

If she is happy with the outcome of the halter monitor, she will not have to see him for six months. This would be ideal. She said outside of his heart rhythm, which is a minor concern, his heart is in good shape. All of his repairs have been a great success. We of course are grateful to hear that.

We are very excited and happy that Doug has been excepted into the Early Childhood Toddler Program at the Westside Early Childhood Center. This is a program specifically designed by the Cuyahoga County Board of Developmental Disabilities for children under the age of three who have physical and mental developmental delays. This is fantastic for Doug as it gets him out of the house and exposed to other children with varying degrees of disabilities. They will not only do his therapy there, but will also be playing and learning to act in a social environment. We have been to a few of the 'Play Groups' that they have at the center and I have been impressed with how well they work with the children.

So instead of five different therapists coming to the home two times a month each. Doug will be picked up at home and transported to the Early Childhood Developement Center in Westlake where he will be in therapy and preschool classes every Thursday and Friday from 10AM - 4PM. This will give him twice a week therapy in ALL disciplines. We will no longer have therapists at the home and this program is FREE. Let's face it FREE is my favorite four letter word. I can not think of anything that you can put free in front of and make it worse. This saves us and our insurance company thousands of dollars in costs a year.

The school starts 9/9/10 and runs the entire school year. Doug has been on the waiting list for this program since January, and we are thrilled that he has been accepted.

Not to be out done, Bob will be going to daycare starting around the same time. He will be in the Tuesday and Wednesday morning class from 9:15AM - 11:15AM. Cathy and I are very happy that he is going to be exposed to more children. He has become more and more shy around people he doesn't know and we hope that this will help to bring him out of his shell and make him more social with other children.

We will try to update on Doug's condition and I will be posting some new pictures of the boys soon. Thanks for all the support and prayers. They have done wonders for all of us.

Jim

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