Spring 2011 - SSM Cardinal Glennon Children's Medical Center

whose primary clinical and researchfocuses are bleeding and clottingdisorders, and a nurse coordinator,physical therapist and social worker,all of whom are dedicated to theCenter and its patients.“Members of our team are requiredto attend an annual regional meetingwith other hemophilia treatmentcenters to ensure that we are up-todatewith leading edge care,” saysDr. Puetz. “Our patients have theopportunity to participate in researchstudies and various bleeding disorderdatabases, and our facility at theCostas Center allows us to provide care in one place, even ifthe patient needs an infusion.”Brent Miller, MD, Grayson’s father, is a nephrologist. Bothhe and Shelley have had many personal and professionalexperiences at health care institutions, and they agree thatthe care Grayson has received at Glennon is unmatched. “Inmy healthcare experiences, I always ask the question: ‘Arethese people here to benefit themselves or their patients?’ Ican truthfully answer that the faculty and staff at CardinalGlennon are here for the patients. From the people makingthe food to the doctors, the feeling that everyone at Glennonis concerned for the well-being of your child is palpable andcomforting,” Dr. Miller says, adding, “Even the parking iseasy, and times when we’ve had to come to the ER, we arealways taken care of right away. ”“You wouldn’t understand until you’ve had a child treated atGlennon,” Shelley says. “One of the biggest differences is thatwe can always get in touch with an attending hematologist,“Hi Grayson! You remember me. We go way back.” Dr. Puetzsays. “I haven’t heard from you lately, so that’s good news.”no matter what time. I called everyday for the first year of Grayson’s lifeand they were always helpful.”When Grayson was 7 monthsold, he had a spontaneous brainhemorrhage and was rushed toCardinal Glennon in the middle ofthe night. Hematologist ChristopherHugge, MD, was on-call and arrivedat Glennon at 4 a.m. to attend to hispatient. “That’s when we found outGrayson was a severe hemophiliac,”Shelley remembers. Grayson haddeveloped an inhibitor that makesit difficult to obtain enough clottingfactor to control bleeding. Concerned for their baby’s life, theMillers say they were “extremely grateful” Grayson was beingcared for at Cardinal Glennon.“When we first met Dr. Puetz, he told us his goal was to turnGrayson’s hemophilia from a tragedy to an annoyance,” Dr.Miller says. “In the beginning, we always thought it would bea tragedy. But three years later, it’s just an annoyance we haveto deal with everyday.”Grayson is seen by Dr. Puetz on an as-needed basis, andannually for a comprehensive evaluation. Shelley administersGrayson’s daily medications through a portacath and draws alab once per month that she takes to Glennon for testing.Just the other day, the Millers received Grayson’s lab results forthe month. “Dr. Puetz called and was so excited. Grayson’s levelwas at 15, which is the highest it’s ever been. We celebrated.”Shelley says. “Those are the things you hold on to.”Dr. Puetz asks Grayson if he can take a look at his port, but Grayson is lessthan willing. “Let me tell you a secret,” Shelley, Grayson’s mother, says to him.After a quick whispered exchange, Grayson willingly reveals his port and talksabout the pirate bed his daddy is building him.“Everything looks good,” Dr. Puetz says. But before Dr. Puetz can consultwith the family, Grayson makes a request – “Can I have my tootsie roll now?”11