Hunter's Story

(photos at the end)

Our son, Hunter, was born in May 1, 2000. He was diagnosed with severe HIE (Hypoxic Ischemic Encephalolpathy), no gag reflex, no suck, blind, deaf, CP. After 10 weeks in the hospital he went home with both a g-tube and j-tube. 7 months after his birth he was given a trach. He was given 2 to 3 years to live.    (HIE = brain injury due to lack of blood and oxygen flow).

In late 2000, during the elections, we fought bitterly with our insurance carrier for nursing help. After several of denials, a well timed law suit and with the help of a local TV station we were finally able to get nursing help at night through our insurance. Sadly, United Healthcare decided at 5 years that enough was enough and terminated his nursing care. Through a miracle (actually an auction we bid on), we were able to have a private lunch with Florida's then attorney General, Charlie Crist. Charlie Crist is now our Governor. We told him our story and how we were no longer going to be receiving nursing care through our insurance. Unfortunately at that time we were 36,000th on the waiting list for the State's Medwaiver program. After our lunch and with some calls made my Attorney General Crist, we were granted an emergency exception and Hunter is now covered by the State.  

The first 2 years were very tough. Constant hospitalizations, pneumonias, RSVs, aspiration, etc. After about 2, he stabilized a bit.  

In October 2003, his j-tube came out (one of many times) and we rushed him to Urgent Care. The on-call surgeon met us in Urgent Care and reinserted the tube and sent us home. I left to run errands and a nurse was orientating with my wife, Susan, and Hunter at home. About 3 hours later, I was called by my wife, stating that something was wrong with Hunter and to meet us back at Urgent Care stat. When they arrived, Hunter was gray, barely breathing, and crashing. After stabilizing him, they x-rayed him and determined that the j-tube re-insertion had gone through his intestinal wall and he had about 3 hours of feedings in his abdominal cavity. They rushed him to surgery, flushed him out, repaired the tear in the intestine and placed him in intensive care. We were told he would survive about 24 hours due to the effects of peritonitis, infection, fever, etc...  

Our stubborn little boy persevered and 30 days later we went home, much to the amazement of the entire hospital staff. In fact he was the first child in 7 years that had survived the level of trauma he had endured.  

That was our last involuntary hospitalization... almost 4 years ago. We have been back to the hospital, off and on, but always elective.  

About 3 years ago we had a Vagal Nerve Stimulator device implanted in his chest to keep his seizures under control. For those unfamiliar, it is essentially like a weak pacemaker that is attached to the nervous system directly and sends out an electrical pulse at regular intervals to control seizures. You can also activate it with an external magnet in the event of additional seizure activity. We have had some success, but Hunter still has seizures, just not as many  

Given Hunter's incredible luck, about 2 weeks after the VNS device was implanted, it stopped working. We spent several sessions with the surgeon and technicians trying to restart it, but later determined that it was defective. What do you know? They have a failure rate of about 1 in 10,000. Hunter drew the lucky number. Go figure.  

Since then he has been relatively stable, although we see no improvement in his general mental condition. He still functions at about a 6-week old level. He sleeps most of the time, and continues to receive speech therapy, physical therapy, and has a teacher come to the house and do crafts and stimulation activities. He is blind, mostly deaf, non-ambulatory, and non-verbal. He continues to be feed via his j-tube.  

His CP has caused quite a bit of spasticity in his lower extremities. We tried Botox injections, tendon release, etc. But his legs are still extremely tight and his left hip is dislocated. His feet are turned outward. Despite therapy, he can no longer bend his legs.  

Lately, Hunter's scoliosis is causing problems. His spine is about 65 degrees now and we are starting to see some complications with his ribs and spine pressing on his left lung. We are facing imminent lung trouble and most likely a lung collapse. I have a feeling this year is going to be a tough one. We already had to call 9-1-1 for the first time in 6 1/2 years recently due to breathing issues. We hope to keep him out of the hospital if possible.  

Hunter is still our only child. My wife Susan has dedicated the past 7 years of her life to his care and well-being.  

We love him more than anything and will continue to care for him as long as he will let us. Our only goal is to keep him comfortable, clean, and as pain-free as possible.  

It's been a long 7 years.