The routine is common; parents try their best to make sure their child eats the right foods, but the child picks and chooses what he likes and when he’ll eat it. And those choices are never the same from day-to-day.
Such is life at the home of Tyler Glass, an active 5 ½ year old whose mom, Jennie, tries her best to make sure Tyler is getting the nutrition he needs to continue growing into a healthy, strong, energetic child. She worries whether or not Tyler is getting enough (and the right kind of) calories or if he could be having adverse reactions to the foods he’s eating.
It’s normal for a parent to worry about their children, only Jennie’s worry for Tyler is far from normal, when he was just two months old she was told not to expect him to live past his first year.
At Jennie’s 22 week ultrasound, her doctors noticed that Tyler was suffering from a condition known as gastroschisis, a congenital abnormality in the abdominal wall that allows the abdominal contents to protrude outside the body.
On December 10th, 2002, at just 32 weeks gestation, Tyler was born via c-section and within his first 16 hours of life went through two surgeries to close the abdominal wall and cover the exposed area. The surgeries resulted in Tyler losing all but an estimated 6 cm of his small bowel. The normal length of small intestine is approximately 200 to 250 cm for an infant over 35 weeks gestation, and approximately 100 to 120 cm for a premature infant less than 30 weeks gestation. http://depts.washington.edu/growing/Assess/SBS.htm
Due to his profound short bowel syndrome, Tyler was surviving on Total Parenteral Nutrition (TPN), which gave him complete nutrition support administered through his veins. While many patients can tolerate TPN feedings, receiving daily nutritional requirements this way does pose a risk for catheter related infection and metabolic complications. Tyler eventually suffered from both.
During his first few weeks of life, Tyler was seen by a number of specialists who evaluated his condition. His gastroenterologist, David A. Ferenci, MD, noted that due to his extreme short bowel syndrome, Tyler would most likely be TPN-dependent life-long, and that most infants in his clinical situation would eventually develop liver disease and eventual liver failure. He discussed the possibility that Tyler would eventually need a small bowel transplantation, however the procedure was still new to the University of Minnesota, and the statistics were still poor for long term survival.
In February, 2003, Tyler was tolerating his feedings and was stable, but his chance for long-term survival was still questionable. Tyler’s doctors talked to Jennie about her options, Tyler could either remain admitted at the hospital for his care, or she could bring him home and with home health care support try caring for him there. Either way, his prognosis was dour, estimating his death within the year.
“In my mind,” states Jennie, “there wasn’t a question, I didn’t know how to do anything but care for my son and do everything I could for him to survive.”
As Jennie prepared to bring Tyler home, the hospital dietitian instructed her on how to mix his special formula and how much he needed to ensure that he met his nutritional requirements. Jennie was then referred to PHS for the materials, supplies, education and support needed for administering TPN and enteral nutrition in the home. A PHS nurse met with Jennie at the hospital to teach her the proper storage and dosing for the TPN, which she would also be receiving from PHS, as well as how to properly maintain the equipment.
Jennie brought Tyler home from the hospital with tube feedings, TPN and weekly visits from a PHS nurse. They worked together to monitor his progress by tracking his calories and growth. And most importantly, by collaborating with Tyler’s health care team to ensure support in the home, Jennie was able to surround him with family and friends who loved him and provided a nurturing environment.
Tyler returned to the hospital when he was 4 ½ months old for a reanastomosis, a surgery to reconnect his bowel with his colon, as he previously had an ostomy through which his stool was excreted. Thanks to Jennie’s diligence in caring and nurturing for Tyler and the support of PHS dietitians and nurses, they found in the surgery that Tyler now had almost 40 centimeters of bowel.
Tyler remained on TPN until his liver started showing signs of faltering when he was 10 months old. Refusing to sit by and let Tyler succumb to the fate that everyone had assumed, Jennie worked with Dr. Ferenci and PHS dietitian Janelle Petersen, RD, LD, CNSD to put Tyler on an aggressive plan to wean him from his TPN feedings to enteral feedings through a G-tube inserted directly into his stomach.
The transition took about 6 months, and by April, 2004 Tyler was receiving all his feeding through his G-tube and the future was definitely encouraging. Oral foods were slowly introduced into his diet, and currently, 4 ½ years longer than Tyler’s original life expectancy, he requires only oral supplements to meet his needs.
Janelle still visits Tyler every 4-6 months and works closely with Jennie and Dr. Ferenci to ensure that his diet contains the right amount of calories and nutrients to keep him healthy and active. If changes need to be made, they work together to decide what supplements need to be added to Tyler’s diet or what other nutritional changes might be appropriate.
Working as a team to bring Tyler home to continue his care there instead of the hospital was important to his survival. According to Janelle, “Mom was the leader of the team that took care of Tyler, the love and support she gave, along with her instinct to fight for her sons’ survival, allowed us to be aggressive with his care and do everything possible to ensure that he will continue to exceed everyone’s expectations.”
