Aidan's Story
January 12, 2020 Update on Aidan-
Aidan was born in August 2004, with an undetected heart defect. He was our first born, a beautiful and what we thought healthy baby boy. At the hospital my husband and I had some concerns about Aidan and questioned; his non-eating habit, color and coldness of skin and we were told of a murmur they heard that they would watch it. We were ignored, blown off and treated as "new and over protective parents". Trusting the professionals we took Aidan home. Three hours after discharge is when our lives changed forever! Aidan woke up crying hysterically, as a first- time mom I tried comforting him, changing his diaper and feeding him. After a few more attempts and nothing calming him, I called my mom. I began telling her that I thought Aidan was allergic to his formula or something for I could hear gurgling. My mom asked, if that was "Aidan breathing?" I said, yes and she yelled, "I'm on my way". I screamed to my husband who was napping that something was wrong with Aidan, within minutes Aidan's coloring became flush and he had red streaks all over his body. As we were walking out the door to take him to the hospital my mom was pulling up and together, we took Aidan to the emergency room. After four and a half hours of numerous tests, lab work and pokes they still did not know what was wrong with our baby. The Doctor then called the nearest hospital with a (NICU) Neonatal Unit and it was that Doctor who immediately sent his transport team and medicine Aidan needed to stay alive. Upon arrival at the second hospital we meet with the cardiologist and were told that Aidan had been "REVIVED" during transport, that he was very, very sick and of his heart defect; Hypoplastic Left Heart Syndrome (HLHS). HLHS is one of the most complex and severe cardiac defects and remains the most challenging to manage of all congenital heart defects (CHDs).
Aidan was born with "half a heart" for his left side (the pumping chamber) was so severely underdeveloped, resulting in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs. If he was a candidate he would undergo a series of 3 open-heart surgeries before the age of three and or need a heart transplant. We were devastated! Forty-five minutes later we were finally allowed to see Aidan- a sight forever etched in our minds. Our precious baby had so many wires and tubes attached to him, so many lights, monitors, nurses, and Doctor's surrounding him. Our priest came and Baptized Aidan and Anointed him of the Sick. Aidan was later transported to a third hospital; Children's Hospital of Michigan where they were equipped to care for him and his "special" heart. After a week and a half of uncertainty things began looking better. Aidan's test results were coming back positive and he soon became a candidate for the surgery. The 1st surgery, the Norwood was performed on September 1, 2004. Thankfully and Lord willing he was home 2 weeks later. Aidan came home with a feeding tube which he only needed a week also with oxygen which continued until after his second surgery. Aidan remained homebound, only leaving the house for doctor appointments until after the second surgery due to the high risk of infection.
Aidan had the 2nd surgery, the Hemi-Fontan done at ten months of age (normally done between4-6 months of age) due to some wheezing and congestion. The Hemi-Fontan was performed on June 16, 2005. Again thankfully and Lord willing he was home 6-days later. Aidan no longer needed the extra oxygen! After a 6 week recovery all restrictions were lifted and Aidan was allowed out into the "WORLD".
Aidan is a thriving, fun, energetic teenager who loves life and everyone around him. He has the biggest, brightest brown eyes and a smile that will light up any room. Through Aidan's heart we have learned how precious life is; we've learned to love more, give more, be more patient and we are definitely more faithful. We live one day at a time and do NOT take anything for granted. Simply put, we have become better people! Although we would never wish this journey on anyone we do NOT regret the lessons instilled within us. As proud, honored, dedicated and determined parents of a child with a heart defect it is our responsibility to do whatever we can in fighting for the cause. It is very important to our family that we tell the world about Aidan, our "MIRACLE", hoping to raise awareness about congenital heart defects.
Raising awareness is important on many levels - it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the public about symptoms of CHD's and possibly save lives.
Aidan showed several symptoms of having a cardiac problem and his little body was going into shock before being discharged from the hospital.
HLHS is not correctable but can be treated with the series of three reconstructive surgeries or heart transplantation. The surgeries have been around for about 40 some years or so and with medical technologies and advancements improving every day, that alone gives Aidan, his heart buddies and us - HOPE.
Aidan will require lifelong follow-ups by his cardiologist, will require heart medications, may also be at risk for an infection on the hearts valves (endocarditis) and will have to take an antibiotic such as amoxicillin before having any dental work done and certain surgeries to prevent endocarditis. Aidan will never participate in any physical contact sports and will always have to be careful of hard blows to his chest. He must also be more careful throughout the winter months of simple illnesses such as the common cold or flu, for it could hospitalize him causing more work on his heart. We wash our hands a lot more and use a lot of hand sanitizer as preventative measures!
Overall, it is expected that children with HLHS, will have a good quality of life: have friends, play, and go on just like other children. Aidan had his 3rd Open Heart surgery, the Fontan on June 26, 2006. Since then he has had 5 Heart Catherizations with another being scheduled soon due to an ongoing arrhythmia issue, 4 surgeries to remove broken or infected sternum (inside) wires and so much more. Aidan is also a stroke survivor resulting in a left hemiparesis (partial paralysis of the left side).
Aidan is the proud brother of Gabriel, Isabelle, Declan, Everett and Devereaux.
Everett was also born with a heart defect; A Functionally Bicuspid Aortic Valve. Although not as severe or complex like Aidan’s- it’s still a heart defect. Everett sees the Cardiologist yearly and will one day require medication and or a surgery to repair or replace valves. He has seen Dr. EL-Khouri several times from birth to 1 year of age. He has had echo's and EKGs to see how his heart is doing especially his valves. Thankfully and Lord willing, Everett remains stable and at this time only requires 1 year Cardiology appointments. Today Everett keeps us very busy as he doesn't sit still, he gets into everything and is walking all over the place. He enjoys playing with all his toys, bath time, flipping through books and especially likes his big sister to read to him. Everett is excited to become a "Big" brother this April.
A huge THANK YOU to our family, friends, co-workers and to all the heart families who have shown us so much love and support. We love you all and appreciate all you do for us and for Hope for Hearts. To all the wonderful Doctors, Specialists, Nurses and Staff who care for Aidan and now Everett- THANK YOU. We hold each of you in our hearts for you are such a part of our family and our lives. Thank you for taking such great care of the boys with your love, care, concern and most importantly your knowledge and wisdom.
Update on Aidan from January 2017-
Got the call from Dr. EL-Khouri (Cardiologist). The results of the 24 hour holter monitor shows Aidan is still having arrhythmias. His bloodwork came back normal. Doc will be calling Dr. Turner (Heart Cath Doc) to discuss everything and we will be scheduling a heart Cath soon. Dr. Turner who does his caths will be checking all pressures in Aidan's heart and lungs, looking for any veins that grew that may need coiling and also trying to find the focal point of the arrhythmia's. The Electro Physiologist will be in the Cath as well and prepared to use a radio frequency to stop them.
We also learned Tuesday that Aidan will need to see Plastics for a possible "revision" on his scars. Aidan's sternum scar at the bottom is very "tight" and does not "move freely" along with several drainage tube scars. Therefore they do not let him get his full breath as it stops him when it pulls or tugs. His OT is very concerned also about the scars" not growing with Aidan as he's growing" which can lead to tearing or ripping and also she is concerned with "damaging or hurting of his intestines". Waiting to hear back from Dr. Walters his heart surgeon as to how we proceed with this issue. We are hoping to have both procedures done at the same time.
Many people often think my Aidan is "healed" or "cured". He is NOT.
Yes, he looks normal and healthy on the outside but his "inside" is a different story.
AIDAN FIGHTS CHD EVERY DAY WITH EVERY HEART BEAT
Aidan and his Doctor - Dr. El-Khouri
Aidan has been seeing Dr. El-Khouri since diagnosis in 2004.
Aidan and Everett Getting Worked Up
Updates of Aidan and Everett till 2019
Everett
Everett had a significant speech delay and was barely talking at almost 2 years old (2017). From age 2-3 years old he was in the TOTE program through a local school district near us- where he received in home speech therapy twice a week. Everett was shy and bashful for a few visits but quickly warmed up and fell in love with his therapist Ms. Chelsea. They worked while playing and Everett was making huge strides. At 3 years of age (2018) he aged out of the program and for a short time -did some drop-in speech service in our local school district along with private sessions two days a week (which he still does today). It was at his well visit at 3 years old and after discussing my concerns with his Pediatrician we decided to see an ENT to check Everett’s hearing and more into his speech delay. December 2018, Everett seen the ENT at CHM where it was determined he needed his large tonsils and adenoids removed along with having a very tethered down tongue tie clipped. Everett had to see Cardiology for a Cardiac Clearance and full work-up. All checked out well heart-wise and he had his surgery December 31, 2018. Although he was extremely sore, he did really well. We learned how much he disliked medication and how strong he really was. After struggling and no pain meds being given for days, we discovered how awesome Tylenol suppositories are for toddlers. Everett lived on McDonald’s chicken nuggets and sprite for almost 2 weeks- as that is the only thing he would eat or drink. Hey, ya gotta do what you gotta do.
2019-It was amazing to see him licking his lips (something he never did) and sticking out his tongue only a few days after surgery. He continues private speech sessions and this year has made amazing progress with words, sounds, putting sentences together and just talking non-stop. We had a great year learning and growing together even took a family vacation up north to a lake house. Today Everett is a very busy and active 4 year old who loves dinosaurs, Dumbo, trucks, cars and all things with dirt.
2019-It was amazing to see him licking his lips (something he never did) and sticking out his tongue only a few days after surgery. He continues private speech sessions and this year has made amazing progress with words, sounds, putting sentences together and just talking non-stop. We had a great year learning and growing together even took a family vacation up north to a lake house. Today Everett is a very busy and active 4 year old who loves dinosaurs, Dumbo, trucks, cars and all things with dirt.
Aidan
Aidan now a teenager continues living life to the fullest. He keeps busy and is always active. He loves being outside, riding his bike, flying drones, swimming, shooting hoops and just hanging with some friends and cousins. He LOVES video games! He fights with his siblings, teases and even talks back to his parents. Aidan follows his 24 Specialist's closely averaging 140 appointments per year including PT, OT and Speech. He takes 9-12 Daily medications including inhalers and breathing treatments when needed. He also has a vibrating vest that he uses to help loosen phelghm. Looking at him no-one would ever imagine all that he's endured. He is the happiest, most loving young man you will meet. Aidan tells anyone who will listen about his "special heart" and he shows his scar "the door to his heart" proudly. First and foremost thank you God for blessing us with your many gifts.
In March 2007, Aidan had a routine heart cath which was his 5th catherization. Everything looked good; his pressures were excellent, he did need some collateral coiling along with a vascular plug. December, 2007 he had another (his 5th) surgery to remove a broken and infected sternal wire. He only has one at the very top left now. Aidan has always sounded very gunky and congested with a persistent cough and ongoing clearing of his throat. He had another sleep study done in June 2008, which reminded us he has an obstructive airway, his O2 drops pretty low when sleeping and he woke over 20 sometimes in an hour. It was suggested to have his tonsils and adenoids removed along with a bronchoscope in the hopes that he would have more room in the back of his throat and breathe better and to get a better look "inside". Aidan had his tonsillectomy in July 2018 and he did really well. He did tell everyone that having open heart surgery was easier and hurt less. The broncoscope reminded us Aidan never outgrew his bronchio-tracheal malacias and therefore, he sounds the way he does. Both the ENT Specialist along with his Pulmonologist were concerned Aidan was developing broncho-casts from his Fontan. After consulting with his Cardiologist and Cardiovascular Surgeon it was thought that he did not have a cast but that something else was certainly going on. In Sept 2018 Aidan had genetic testing done testing for a rare lung condition. Of the three tests- we did two of them. Those came back negative for Primary Cilliary Dyskinesia. We still have yet to do the third test but his Pulmonogist is treating him clinically as if he has this rare lung condition which has no cure or treatment. It's like CF in the way that Aidan has very thick mucus that he is unable to couch up and out. He has several inhalers and he also started wearing a shaky (vibrating) vest to help loosen the mucus. Early 2019, I noticed some more weakness in Aidan along with a droopy eye. After seeing Cardiology and Neurology regarding my concerns especially since Aidan is a stroke survivor- it was determined he needed another Brain MRI- to rule out another stroke and or any blood clots. April 2019, Aidan had a Cardiac MRI which we did not get many great pictures from as he has too much metal "inside" which caused to many artifacts to be able to see anything clearly. His Brain MRI thankfully showed no blood clots and no evidence of a new stroke. May 2019, Aidan had a surgery to stop the growth plate in his femur of his long leg (as he has a large leg length discrepancy that was causing severe leg and hip pain). Aidan did well. The surgery was painful. His Orthopedic Surgeon basically went in his knee with a drill and came out the other side to kill the growth plate. Aidan had a lot of pain for about a month. He also had to wear a long leg brace and change the dressings often. He missed several weeks of school (which he did NOT mind at all). The surgery was a success and has stopped the growth of his femur in his long leg giving his short leg time to catch up, Aidan celebrated in June 2019 ending 8th grade with his friends and teachers at his 8th grade memory dinner. The rest of 2019 he dealt with the increasing of arrythmias of which have become more and more and different in feeling causing pain and near fainting episodes. He had several "extra" appointments with Cardiology, wore several 24 hour heart monitors, medication changes, cardiac stress tests and more. Aidan is currently finishing up his 30 day event monitor of which we are eager to get those results back and come up with our next game plan. Aidan like always is in good spirits , happy with some increased anxiety due to being nervous about his heart and what is needed next. Aidan is in high school now at a new school and district and is doing awesome. He has made new friends who truly include him and genuinely care for and about him. He really likes his new school, friends and teachers. Thanks for checking in. Have a Happy and Healthy year to come.