NEW updates, "diagnosis", and more for Gavin
Gavin was doagnosed with Lymphatic Malformation at 18 weeks gestation. As first time parents, we were devastated that there was something wrong with our child. We had no prior knowledge of what LM was. It was scary. All of the unknowns were frightening to even fathom. The doctors immediately did an amniocentesis to rule out any genetic disorders. All came back normal. For the rest of my pregnancy, we took each appointment day by day. Our doctors said they were measuring him and his LM as two different entities. As long as he was growing as he should, things will be fine.
I was diagnosed with gestational diabetes, polyhydroamnios, and preeclampsia. It was a rough pregnancy from 6 months on. I was put on bed rest for the last month. Then Gavin arrived 1 week before his scheduled c-section.
Gavin was delivered via EXIT Procedure, where they intubate before he is fully delivered. I was put to sleep for this procedure.
Gavin was transported to Miami Childrens Hospital where he spent the next 7 months of his life fighting. The pokes, the prods, the procedures, the surgeries.
Gavin went through sclerotherapy sessions every day for the first three months of his life. At three months he had a debulking surgery to remove a large portion of his LM. His surgery last 7 hours. He came back a new baby but with more complications. The surgery was hard on his little body. They also performed a tracheostomy during the surgery and placed a g-tube.
Gavin was chemically paralyzed for about three days which left his body unable to do anything on his own. He was requiring a lot of oxygen, he eventually need nitric oxide. I pleaded to take the paralytic off. He didn’t require oxygen at all before this. He was working too hard. Thankfully the doctors actually listened. With that day he was breathing on his own and over the vent. They were able to take him off of all of it.
For the next 4 months Gavin battled to heal from his surgery. He had stitches that went from ear to ear under his chin. He required many cleanings and restitchings. He used a wound vac as well. Then he had a skin graft (taken from his groin) to help promote healing.
After all of that he was finally well enough to go home. He was doing well with his tube feedings and his tracheostomy.
We finally went home after a long 7 months.
He flourished at home. He began therapies (PT & OT)
He had a couple hospital stays throughout the next few years.
The first hospital stay after our NICU adventure was just after his first birthday. Just around Easter. He coded while in our GI appointment. Thankfully the CODE team was there in seconds. He was diagnosed with chylothorax. They had to extract fluid from between his lungs and chest wall cavity. He spent another month healing from that.
we moved from Miami to Jacksonville where we met the most amazing Pediatritian and family. Come to find out, his son has the same disease as Gavin so it was so easy to relate and talk with him.
After Gavin’s 3rd birthday we had to take Gavin to the ER. He got sick quick. He was lethargic and not himself at all. What we thought was an LM flare was actually Sepsis. This hospital stay was very scary. The infection was in his blood. He spent three weeks battling this infection. This was a grueling fight but he came out on top.
We then moved to Johnson City, Tennessee in June. This move was hard. Our family endured a tragic loss of Gavin’s Grandma. Moving to a new state is not easy with a medically complex child. We finally became settled about 7 months after our move. We attend Vanderbilt Childrens Hospital where they have a team that specializes in Lymphatic Malformations. Gavin has met with his team there and their goal is to work on getting his trachea ready for decannulation. He’s had sclerotherapy and will soon have laser surgery in July on his trachea.
Overall, he’s grown so much. He’s matured and is learning things so quickly. We’re making progress with feeding and speech therapy as well as OT and PT. He’s in Pre-K and enjoying life like a toddler should.
We’re just living life day by day and living it to the fullest.
Gavin has been challenged with Chylothroax, Sepsis, weight gain, LM Flares, oral aversions, and possible Autism (not yet diagnosed)