In November 1998, Jack came storming into this world 7 weeks ahead of schedule. After spending six weeks in the Special Care Nursery, he came home on a small amount of oxygen. Once home, he appeared to be doing well, although he was not an aggressive eater. Approximately three weeks after coming home, Jack stopped breathing for a short period and was admitted to St. Louis Children’s Hospital. At that time, it was discovered that he had a severe deformity of his heart and surrounding vessels.
Surgery was performed and Jack came home two weeks after surgery. Within two days of coming home, he was back in the hospital with a partially collapsed lung. After three weeks in the hospital, he came home on nasal breathing machine and oxygen. Again, Jack appeared to be doing well although he did continue to have a difficult time eating. Two weeks after coming home he was again in respiratory distress and was once again admitted to the hospital. Jack was so sick this time that he was placed on a ventilator. After several failed attempts to get him off the ventilator, a decision was made to perform surgery to resolve the constant collapse of his right lung. Following surgery, he again failed to wean from the ventilator. At this point, neurology was consulted because Jack demonstrated severe muscle weakness. A muscle biopsy was performed and it was determined that Jack appeared to have an infection in his heart muscle.
Jack was started on high dose steroids and after several weeks he seemed to have slightly improved. Another attempt was made to wean off the ventilator and again, he failed. A decision was made to perform a tracheostomy so that he could come home. When oral feedings were resumed it was noted that Jack choked on his formula and they found that he could not swallow. Surgery was performed to give Jack a permanent feeding tube (a g-button).
After a three month stay in the PICU, Jack left St. Louis Children’s Hospital with a trach, a g-button and connected to a ventilator. When he was one year old, he had a brain MRI that revealed multiple brain deformities. At the age of 13 months, it was discovered that Jack had cataracts in his eyes. He had surgery to remove the cataracts and now has lens implants. Based on the muscle biopsy, the MRI and the cataracts, Jack was initially diagnosed with a “congenital muscular dystrophy with eye and brain involvement”.
Our family moved from St. Louis to Phoenix in 2002. However, Jack continues to receive care from his team of doctors in St. Louis – which includes neurology, cardiology, pulmonolgy, orthopaedics, ophthalmology and otolaryngology. We travel to St. Louis at least every other year for a week of appointments and routine procedures. In 2005, a second muscle biopsy was performed on Jack and due to the advances made in the ability to test for diff erent types of muscular dystrophy, he was given the offi cial diagnosis of “Dystroglycanopathy congenital muscular dystrophy”.
As a result of his disease, Jack suffers from severe muscle weakness and is much like a quadriplegic. Jack requires assistance with every aspect of his life. He is ventilator dependent 24/7 and is 100% tube fed. He is unable to communicate with us verbally, however, his smile and his eyes speak volumes. He is a very special little boy with a beautiful spirit.
My husband and I both work full-time outside the home and we are fortunate to have nursing for Jack during the day when we are at work. Because he is medically fragile, Jack requires continuous monitoring, even through the night. We don’t have night nursing, which makes for many nights of interrupted sleep and a constant state of exhaustion.
Jack has three siblings, two older sisters and one younger brother. Not only will Ryan House give my husband and me some respite time away from the demands of caring for Jack, it will also give us the opportunity to spend time with our other children and attend events that we wouldn’t otherwise be able to attend because of the level of care Jack requires.
While I never imagined that I would be able to leave Jack in the care of others for an extended period of time, based on everything I’ve read and learned about Ryan House, I know with confidence that he will be safe, well cared for and loved during his stay at Ryan House. As the parent of a chronically ill and medically fragile child, Ryan House is a welcomed and much appreciated resource that we are very fortunate to have in our city. I look forward to getting to know the Ryan House family and them getting to know Jack and our family.
By Ann Schrooten
To read more about Jack go to www.jack-schrooten.blogspot.com
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