Harrison Strong

Thank you for considering a donation in our Dad, John Reedy’s, memory for his grandson Harrison’s upcoming genetic lymphatic malformation surgeries. Dad was very passionate about supporting Harrison’s difficult journey since birth, and the pain to watch his parents, Jacqueline and Brad, witness, care and fight for Harrison. This donation will provide his parents help in the financial burden in this unexpected genetic malformation. Please take the time to read Harrison’s story below.

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On October 18, 2019, Jacqueline and Brad Dunlavey welcomed their sweet boy Harrison James into the world. Harrison made his debut weighing in at 7 lbs 5 oz and 20” long. Immediately after his birth and while checking his vitals, the Neonatal doctors noticed Harrison's tongue appeared to be very swollen and a found a small lump on the left side of his neck. Harrison was then admitted into the Neonatal Intensive Care Unit (NICU) for further examining and an MRI. The idea was that he would be released soon. His vitals were great and his lungs were full-term and healthy. The MRI confirmed that the tumors were benign so that was an instant praise to God but the doctors still had so many questions about the area in his mouth, tongue and neck. A few hours in NICU turned into days in NICU while doctors examined Harrison to determine the next best steps. Dr. Miyamoto (ENT) who was following Harrison, determined that a tracheostomy was neccessary should Harrison's airway suddenly become unsafe/compromised. Dr. Miyamoto said it was better to be proactive than reactive. It was alot of information to take in; a hard pill for Brad and Jacqueline to swallow, for sure. They remember sitting down and talking through everything. They had just gave birth to a son who was happy and very healthy aside from the unknown tumors but they trusted the bigger picture.

On day 3 of Harrison's life (October 21st), he was transported to Peyton Manning Children's Hospital in Indianapolis for surgery. While in surgery, Dr. Miyamoto noticed a small tear in his throat. He was concerned that the scope knicked his throat causing a small tear. Plans quickly changed. Dr. Miyamoto decided to put a temporary tracheostomy in Harrison's trachea in hope of allowing time for the tear to heal. Harrison was ordered to stay at Peyton Manning Children's Hospital in ICU. He was paralyzed and heavily sedated with morphine for 10 days. Their goal was to keep Harrison safe, allow time for his throat to heal, to be comfortable, and most importantly- to not move at all.

On October 28th (day 7/10), Harrison went back into surgery to see if the tear in his throat was healing. Answered prayer- the tear had completely healed! Dr. Miyamoto was able to finish putting in a permanent tracheostomy (stabile & safe). Harrison also underwent surgery to have Gtube placed so that he could continue to be nourished/fed as safe as possible.

On October 31st, they slowly began the process of taking Harrison off the paralytic so he could be awake again and wean the dosage of morphine he had been receiving for 10 days. Another answered prayer but this also meant that Harrison would begin to experience withdrawals.

On November 4th, Harrison underwent his 2nd MRI. The purpose of this MRI was to get clear images (since he could now safely be put under anesthesia) from his brain to his chest to ensure there were no new cysts or roots as well as the best treatment plan for Harrison. Answered prayer- no new cysts or roots found and doctors had clarity about the diagnosis, a lymphatic malformation.

On November 6th, Harrison had his first sclerotherapy treatment. This is where a small catheter is inserted into his left check to drain the brown, lymphatic fluid from the cyst. Then Dr. Underhill (radiologist) inserted 2 syringes of doxycycline using xray to determine the best area to insert the antiobiotics. The results from one treatment are seen 6-8 weeks post procedure. The idea is to shrink/scar down as much of the cyst as possible.

On November 7th, Harrison was transported back to the NICU at St. Vincent Indianapolis. Since he has been back at NICU, Harrison has met many milestones. Harrison has been surrounded by a wonderful group of nurses, respiratory therapists, doctors, speech, occupational and physical therapists. It takes an army! They have become family to Brad and Jacqueline. The last 3 weeks of Harrison’s hospital stay, Jacqueline and Brad were training for Harrison's daily care in preparation to bring him home.

Most of the updates have continued over the last Two years through Jacqueline’s personal Facebook page, though back in late June, they met with the Vascular Malformation clinic over at Cincinnati Children's Hospital. The team was quite impressive, passionate about what they do, and truly care about these kids as it is their area of expertise to see children with Lymphatic Malformations. To say they have a good understanding of his condition is an understatement. Harrison's condition is chronic and complex. They have known this throughout his almost three year journey (October 18th is Harrison's 3rd birthday) but feel more armed with information after meeting with the team at Cincinnati than we ever have before. They were very honest and transparent about the complications and risks due to his condition. Since that visit, we knew God lead them to the place they were meant to be and Harrison would have great care.

Since the visit in June, Harrison has been in great hands with the team over at Cincinnati Children's Hospital. Their communication and follow up has been wonderful. Harrison has had two flare-up's since that visit. One began in late June and the 2nd in early August with just 3-4 days break in between. He has been through two rounds of 14 day antibiotics and steroid treatments in addition to the daily care when his tongue swells, bleeds, and scabs. It is a vicious cycle and Harrison is such a tough kiddo. Having two flare-ups back to back has covered most of the summer.

Harrison was scheduled for his 4th sclerotherapy treatment (first sclero on his tongue) and ENT scope procedure on Friday, August 19th, 2022. The procedure date was moved to Tuesday, September 6th, 2022. These dates have been postponed twice due to the condition of his tongue being so swollen and angry. The procedure comes with a higher risk of nerve damage and other complications with his tongue being extremely swollen and infected. It is complicated. As soon as there are signs of consistent healing, the team will work fast to fit Harrison in the schedule or as an add on. Cincinnati is one of the most comprehensive clinics in the world so scheduling is typically months out.

Several people have asked about Harrison's ability to speak and if that is affected by his protruding tongue. Harrison has been working with an amazing Physical Therapist for three years. He has also works with a Speech Therapist and has worked with an Occupational Therapist. This team has been an important part of Harrison's progress and a guiding light to their family. When Harrison turns the age of three in October, his therapies will end and they would like to be able to continue Speech Therapy and PT services as they know how important it has been for him developmentally. This will become an out of pocket cost expense.

Harrison also has an upcoming evaluation with a Developmental Preschool. A Psychologist, SLP, Speech Therapist, and Physical Therapist will evaluate him to see if he is eligible for Developmental Preschool. Harrison's special needs are very unique so important to make sure this would be a good fit for Harrison.

We welcome you to continue to follow Harrison's journey through Facebook where Mom, Jacqueline Dunlavey, shares the updated on her personal page. Thank you for all of your prayers, kindness, and generosity.