Adam Edward Dysert

Adam Edward Dysert was born on October 12, 1996 after an uncomplicated pregnancy. Just one problem, he was blue. The next day he was transferred to Children's Medical Center in Dayton, Ohio and was diagnosed with Hypoplastic Right Heart Syndrome. He has tricuspid atresia, transposition of the great vessels, and coarctation of the aorta. Basically, he only has three chambers in his heart. We were told that with surgery, he had a very positive outlook. Adam was transferred to the University of Michigan Hospital and had open heart surgery when he was six days old.

He did great with the heart repair, but every time they tried to extubate him, he had terrible strider and pulled his sides in heavily with every breath. He had an MRI and a bronchoscopy and we were told how lucky we were that his vocal cords weren't paralysed. We were given the option to transfer Adam back to Dayton so we could be closer to home, so he was transferred on October 31. He was on the vent when he got back to Dayton, but they slowly weaned him and we thought things were ok. But, a day after being extubated, the strider was back. Finally, on November 13, we had Adam transferred to Children's Hospital Medical Center in Cincinnati, Ohio where he saw Dr. Robin Cotton.

Adam had a flexible scope in the CCU and we were told in two seconds that he had vocal cord paralysis and that he needed a trach. With all he had been through, I was scared to death. A social worker brought us an information packet to read and showed us what a trach looked like. I couldn't touch it. How could something so foreign be put into my innocent child who had already been through so much?

On November 14, Adam got his trach. As horrible as that experience was, it was such a relief to see him after the trach was put in. He breathed so calm and gentle. Watching him not struggle for breath made it all worth it.

We were told that we couldn't leave the hospital until we had nursing care set up for 24 hour at home care. We live in a really small town and it was impossible to find help. I stayed in the hospital with Adam all day and night, and did all of his care, so on November 27, I said enough is enough and we brought Adam home. No nursing care, just my husband and I. Adam was 47 days old.

Everything took a little getting used to. Like the noise of the air compressor at night, and all the stuff you have to haul with you, but now it is second nature. Just recently I have gotten brave enough to take Adam in the car by myself, and he is presently 20 months old!

Adam had his second open heart surgery on June 4, 1997. They took the trach out to intubate him and left it out for two days. On the third day the trach was put back in and he did fine. We brought him home after six days. Adam faces one more surgery for his heart (it is a three step process) and we will learn more on the trach in August.

We have been told numerous times that the trach was ready to come out. Each time has been a failure and a major disappointment. You try so hard to not get your hopes up, but deep down, I can only imagine what life will be like without the trach. The possibilities are endless. Adam's last L+B showed tracheamalasia above the trach site. Dr. Cotton doesn't know how he wants to treat Adam. He said Adam is a mystery to him. Adam's vocal cords are almost 100%. By the way, the paralysis was due to a knicked cord during his first open heart surgery.

Adam is a happy, busy, active little boy. He is the light of our life and a joy to be around. If you didn't see the trach, you'd never know he had been through all that he has. His favorite thing to do right now is plug his trach and scream at the top of his lungs! It is music to our ears!

Update: September 27, 1998 - Last month Adam had a granuloma removed and we were told that the trach was almost ready to come out, that the cords were moving well, and that we would plug the trach after the removal of the granuloma, and that the trach would come out. Adam did not tolerate the plug, his sats dropped and he was terrified. It was obvious to us that he couldn't breathe. That evening we tried a fenestrated trach, he did ok with it but we couldn't suction it, and the next day we were told to come back in six weeks and take the fenestrated trach out when we got home. We weren't given any answers and were very discouraged.

I called the nurse practitioner a few weeks later and asked her opinion and she said to try plugging the trach during one of Adam's naps so he wouldn't be aware of it being on. I did this and he labored to breathe and also had stridor, something that brought back some pretty scary memories. We made an appointment to see her in the office to try a Passy Muir Valve since the plug wasn't working.

Adam had a flexible scope done before trying the PMV and we were told that he had 70% movement on the left cord and none on the right. For the past year and a half, we have been told how wonderful his cords were doing, but now, all of a sudden, there is no improvement. Adam didn't do well with the PMV, he turned blue, gagged, and choked. We brought the PMV home with us and hope to try again at home when he is more relaxed. The doctor told us that next summer is our goal for getting the trach out. He said that if the right cord doesn't improve, he may have to go in and "tie" it back surgically. I don't think anyone actually knows for sure what is going on with Adam. We have also brought him to a Pulmonologist who said he had good cord movement. We don't know what to believe or think, all we know is that Adam can't breathe without the trach and to just hopefully be able to take it day by day and hope for the best.

Adam will be 2 in 2 weeks and we can't wait to celebrate his birthday. We never thought his first birthday would arrive and here it is, almost his second. He is still the light of our lives, a joy to be around, and so full of energy. We have recently started sign language and he is picking it up really fast. He is up to 14 words and we couldn't be more proud! The trach hasn't slowed him down in any way and I'd say he's just about as "normal" as any other child his age!!

Six weeks later we started plugging the trach. The first few days he didn't tolerate it at all and then he got to the point where he would get mad if we took the plug off! Adam was plugged for a few months during the day and after observation overnight in the hospital we were given the ok for him to be plugged 24/7 which he did for 10 weeks.

On July 12, 1999 he had a routine scope which showed he had 2 granuloma's that needed to be removed but we were told his airway looked good and there should be no reason why the trach couldn't come out once the airway healed from having the granuloma's removed.

Adam had another scope on August 4 and his airway looked good. The plan was to decanulate him in the recovery room but he was mad so we decided to wait til he was settled in a room. He had a bad reaction to the anethesia and was ill that night so we waited til the next morning and with no bells, whistles, or fanfare, the trach came out. We were so excited and happy! Adam just acted like it was any other day of the week!

After a 48 hour hospital stay post decanulation Adam was dismissed. He has to go back in 6 weeks for another scope "just to be sure" things look good. Our biggest challenge so far has been trying to keep his stoma covered. We are using cloth stretchable bandaides and they seem to work the best.

It has been a long time in coming but we are thankful that it has finally happened. Adam has truly been blessed and so have we to have such a miracle living with us and sharing his life with us.

On April 26, 2000, Adam had his final heart repair. He was in the hospital for a total of 11 days. It was quite a trying time on all of us. He was so aware of all that was going on around him but was such a trooper! The caps on the syringes for his oral meds he used as "rocks" for his construction and the end caps on IV syringes were "pipes" he used in his construction also! He was quite cooperative but there are only so many things you can do in a hospital bed! Adam had problems with pleural effusions and had to have an extra chest tube put in that drained for days. Adam had a lot of visitors and was convinced that anyone who came to see him had to bring him gifts! For weeks after coming home, he expected gifts from anyone walking in the door! He is now doing really well cardiac-wise and doesn't go back to see his cardiologist until March which will be 6 months in between visits! We are thrilled with how well he is doing!

On October 2, 2000, Adam had his stoma closed. We were not prepared for all that was about to happen. We were originally told that they would just put a little stitch in and the stoma would be closed. When the dr. came out after surgery we were told that they had to exise all of the scar tissue around the stoma and that they had put a temporary trach in place to be sure that he didn't inhale too much air directly into his trachea. Adam woke up from anethesia very upset because he couldn't talk. He was scared and we were scared for him because we hadn't prepared him for having the trach in when he woke up. After an hour they took the trach out and we were really in for a shock when we saw his neck. He had a hole that was bigger around than a dime and it was deep, really deep. Adam wouldn't let the drs. around him so I tried to put a steri strip on the hole as the dr. had told me to. It was seeping so much blood that there was no way it was going to hold it shut. The dr. kept telling me to give it 48 hours and it would be shut. We spent the night in the hospital and left the next day with the hole still seeping and oozing blood. Adam is on aspirin to keep his blood thin due to his heart so this didn't help at all.

After 5 days or so the hole did finally scab over. Adam went back for a scope 6 weeks after surgery and we were told that everything looked really good and that we don't have to go back for a scope until November 2001 and if all is ok then, we will NOT have to see the ENT again! Hooray! That was super news for us!

A big event took place in our family on June 6, 2000, Adam became a big brother to Evan Ronald Dysert. Evan was born heart healthy and airway healthy and is just your "typical" baby! Adam is a super big brother, helping a lot with Evan. He likes to hold him, teach him how to push trucks, tells him all about what his construction equipment is, and I think he will teach him how to be ornery also!

Adam is doing very well. The site where the trach was is just a scar now. Adam's favorite things to do are playing construction and playing farm! He tells us he is going to be a construction worker when he is bigger or maybe a farmer. As long as he is happy, he can do whatever he wants! He's looking forward to going to preschool next fall and has played in the snow for the first time recently and LOVED it!

Adam age 4

• Article from The Daily Standard (Celina, Ohio) featuring Adam

 Brother Evan (age 2 1/2) and Adam (6 years old)

Update: January 4, 2003 -  It's so hard to believe that another new year is here and Adam is in kindergarten! He loves going to school, loves participating in all the activities, and loves having other kids to play with at school! Right now he is off on Christmas break and asks each night if he gets to go to school tomorrow. He misses it!

Adam saw Dr. Cotton in November. He did a scope in the office and I was so proud of Adam. He handled it so well - he is such a great kid! We were really hoping that this would be the last time to see Dr. Cotton but he said he's not letting us go that easily and that he wants to see Adam again this summer for an office visit. At the time of the last visit, Adam had been coughing for 5 weeks and we had taken him to his pediatrician twice, called her twice, had him to the ER, and to a local ENT and all they could tell us that it was probably allergies. Well, Dr. Cotton had a sinus x-ray done and it turned out he had a sinus infection! It just simply amazes me that no local doctor could diagnose this! That we had to go to Cincinnati to have him diagnosed and to get him on an antibiotic to get rid of it. I am going to make his appointment for June, so we can enjoy the entire day and not have to worry about getting back in time for school the next day. We've been going to Cincinnati for 6 years and have never been to the zoo so that is one of our plans for that day.

Adam is doing well heart-wise also. He saw the cardiologist in December and he said that Adam is a very "boring" case! That is what we like to hear! His oxygen sats are running about 89%, which is good for him. He had an EKG, which was also good. Adam weighs 48 pounds and is 48 inches tall. His phys ed. teacher tells me he keeps up with his classmates and that he fully participates in class. He thinks phys ed. is just the coolest thing to do especially when they did gymnastics. The balance beam was his favorite and the teacher told me he was the most improved student at doing it. He was terrified and held on when he first tried but after several attempts was doing it on his own! 

Adam has discovered video games and loves to play Play Station. He is amazingly good at it! He is also still very into construction and still says he is going to be a construction worker when he grows up. He wants to drive a CAT bulldozer! He is always telling his little brother Evan how things work and just how the big machines operate.

Adam also volunteers every Tuesday at our local nursing home. He goes with his grandma (my mom) and they help with mass. Adam brings residents into the dining room for mass, passes out books, does offetory, and serves. Last Tuesday I went along to watch him and was so impressed by him! He has his "favorites" who are ready with candy for him (which he loves) but he also will go up to any resident, no matter what they look like and say hello. He shakes lots of hands at the sign of peace and is just a little social butterfly. It makes me very proud of him to see him be such a kind and compassionate child. (If he could only be a little nicer to his little brother!).

It is still mind boggling to think back on all that we have been through with Adam and how far he has come. It is even harder still to believe that he has had his trach out for over 3 years. The time has just flown by. He is just an average kid who happens to have a huge medical history!

Adam age 6

I'll gladly "talk" with anyone who reads this. Email address is: teresadysert@aol.com

Teresa Dysert

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