At the hospital, Jason and Justin are seen, prior to their scheduled infusion, by Dr. Helio Pedro, Chief of Genetics at Hackensack University Medical Center and Karen Valdez-Gonzalez, Certified Genetic Counselor. The boys begin this day by telling the parking attendant we are going to the DAR room. We then fight about who is going to press the elevator button, so we’ve agreed to do it together. As we wait for the elevator to pick us up, we practice what level our car is parked (a memory building skill) because the boys need to tell us when we are finished with our day.
The elevator arrives and we pile all our gear in. The boys are anxiously waiting for the doors to open to the main level. As the doors open the race begins…the boys bolt out of the elevator with mom and crew trailing behind to the gift shop to grab a bag of candy before we hit the infusion room. Our passes are in hand and the elevator battle begins again. The doors open and mommy must have the singles ready because we pass a vending machine. Jason gets his Doritos or Mike and Ikes and Justin always the same his “doodles”. We are now officially ready for infusion!
Upon entrance to the DAR room the nerves of the boys kick into full gear and their behavior becomes a bit unruly, but the nurses know exactly how to handle them and do it with the most patience. We get in our room, shoes come off, onto the scale, and Jason our brave little man goes first. An intravenous is inserted into his hand or arm depending on which vein wants to cooperate, some days this poor little guy gets stuck 2 and 3 times before we get a good line in, and he NEVER cries! He is very comfortable seeing what is going on and is so CUTE in telling everybody ESPECIALLY Justin, not to be scared “It’s just a little pinch”. Justin is up next, his little orange fingers rest on the table as he gets stuck next. He is quite a bit more scared with lots of tears, but always cooperates. They truly are amazing to watch.
Jason gets his Benedryl first (he has a reaction to the meds) , and we wait 30-45 minutes for the pharmacy to deliver the bags of medicine. The boys have their DVD’s, backpacks full toys & snacks, or get visits from Child Life workers to help the time pass. They place their chicken fingers & fries orders, raid the nurses fridge and snack bucket and we pray their 4 hours goes quickly!
During the 4-5 hour infusion, we all try our best to have the boys remain as still as possible while the DAR healthcare professionals monitor blood pressure, take temperatures, and come up with creative ways to keep them in their beds. Sometimes it works and sometimes we are racing around the DAR room standing on our robots (IV poles).