Grant Diagnosed at 11 Months, Begins Using Pump on Second Birthday!
After being diagnosed with Type I diabetes late at night on August 21, 1997 in the local ER, our 11-month-old son Grant was rushed by ambulance to Riley Hospital for Children in Indianapolis. He had experienced a difficult week with increasing lethargy, difficulty breathing, fatigue, lack of appetite, insatiable thirst, loss of weight and frequently soaked diapers. We spent three days in the ICU and two on the school age ward to be closer to nurses with some training in diabetes care. After five days, the diabetes team had empowered us to return home (on his first birthday, August 26). Our family and friends praised God for bringing him to life TWICE in one year!
Yet as many of you know, the days following our discharge were not easy. Trying to count carbohydrates and measure food is difficult in itself. But doing this for an infant was nearly impossible. I was still nursing little Grant, so determining how many carbs of milk he consumed was difficult, to say the least. When he ate baby food, you can imagine the turmoil when it was time to assess how much actually went into his mouth, how much was in his hair, on the high chair, on the floor, etc. Because Grant could not yet talk, we had to watch his every movement to pick up cues about his blood sugar level. We easily mistook low symptoms for highs and vice versa. The result was that we checked Grant between 10 and 15 times per day.
Each day I prayed that we would more capably care for him, that his blood glucose levels would start falling in a normal range, that the shots and the blood checks would get easier, etc. Yet the difficult battle did not ease throughout the entire year. We became more proficient at caring for him, but his blood sugars still fluctuated wildly from 30 to 500 for all kinds of reasons. Even the endocrinology team at Riley Hospital agreed we were putting forth an incredible effort with few positive results to show for it. We began to read and hear about the insulin pump. We realized that the amount of time, energy and effort we were putting forth was similar to the requirements for pump therapy. So after studying everything we could, we chose to move forward. Insurance approved his pump after we sent detailed records and accounts of Grant's condition. When the pump arrived, doubts resurfaced. Grant would become one of the world's youngest pump users, and we thought we would be quite alone on the journey.
My husband sought God's will for guidance in our decision-making process. On that day he found the KidsRPumping website. After reading testimonials on this page, we were at last convinced that it was the answer for Grant. We e-mailed some of the families on this web page and asked endless questions. It is incredible how helpful and caring people are - and that the KidsRPumping has connected us with pumping families that would have been impossible to find without the Internet!!! We were inspired knowing that we would have a network of contacts throughout the nation. On September 3, 1998 when Grant turned two, we underwent outpatient training, put the pump on him for the first time, and after our "big day", went to a restaurant on the way home to let him eat at his leisure and to his liking. It was such a joyous experience. Life was already showing great promise and freedom!
In the days and months ahead, Grant became familiar with a more relaxed, flexible lifestyle. We are less rigid clock-watchers. Grant can now wake up whenever his body prompts him to in the morning, rather than be woken up with a lancet in his finger and juice squirting down his throat. A tragedy no longer occurs when our family meals are delayed or thrown off schedule. In addition to much more tightly controlled glucose levels, he is eating more healthy, well-balanced meals. With three little boys, life demanded spontaneity and we now have the ability to live that lifestyle again!
We know that the pump is not a cure. It is simply a different method of delivering insulin, which has enabled us to more tightly control Grant's glucose levels. His hbA1c is at the lowest it's ever been: 7.9 (age 2 ½), with very few lows. We appreciate that it delivers insulin more like a human pancreas, providing the basal rate throughout the day. It allows us to deliver the precise amount of insulin to cover whatever food Grant does or does not consume at the time he is able to eat it! One of our biggest fears was that Grant would disturb the pump or the infusion site in the usual, playful mischief way which two year olds conduct their life. Through the encouragement of other parents of young pumpers, we learned this would probably not be the case. THEY WERE CORRECT! Grant never bothered the tubing, infusion sight or pump. We use the MiniMed 507C pump with the Silhouette infusion set. His stomach is the best place for his infusion site now, so we rotate spots on the fattest part J We have found that the infusion sight is much more protected when Grant wears overalls, so we simply bought him a supply and packed away all of his two piece outfits. (The first week he scooted down the stairs on his tummy, and the infusion set was pulled out). We use the new EMLA patches 1 1/2 hours prior to insertion and they seem to help tremendously. Grant is not joyful when we change the set every three days, but he is used to the routine and knows what to expect. We have found that being consistent is beneficial - we change it after bath every three days and situate ourselves at the same spot in our home every time. We try and establish a pleasant and calm atmosphere before and during the change, and we load him with praise and positive, cheerful chatter about how healthy the pump is helping him to be. He even lifts up his pajama shirt and lies back on the bed when it is time to insert the needle. The worst part for him is cold IV prep, so I warm the sealed package close to my skin (whenever I can remember!) We had one serious week-long episode of his skin reacting to a particular brand of tape we were using (both to cover the EMLA and to tape down his Silhouette). From the Parents Chat and e-mails from other parents of young pump users, we learned there were better tapes which cause less sensitivity. We live in chilly Indianapolis, so Grant's skin is quite itchy! We use hydrocortisone when the itching becomes pronounced, and both of these changes solved the problem.
Our son, who was barely even "here" at 11 months, has been returned to us! There is so much more joy, peace, health and happiness in the Costakis home. Yet our lives are not "just the same" as they were before Grant was diagnosed -- they are enhanced, as we are aware of how difficult life would have been for us without the pump. One of our goals is to help other families discover the benefits of using the pump and serve as a resource for parents trying to make their own personal decision about trying their child on the pump. One of the most freeing pieces of advice I was given by one mom of a little pumper was, "Remember, if you try the pump and it just doesn't work out, you can take a break and try it again later." When I realized it wasn't an "All-or-Nothing" commitment, I was more relaxed to try it. Yet thus far, pump therapy has been the answer for Grant. Once when we were faced with the possibility of being forced to take him off the pump for a while, I realized I would rather have my right arm cut off than to willingly return to needle therapy.
If we can help other families to make an intelligent, informed decision about utilizing the insulin pump as well as possibly bring joy and freedom, then we will be even further blessed in the midst of this challenging experience. We consider the insulin pump to be the single most important tool that we have at this time to assist us in our daily effort to keep Grant healthy (for today and in the years ahead), relaxed, feeling his best and living as carefree a lifestyle as a two-year-old deserves!
I have authored a pamphlet for MiniMed entitled, "A Pumper in the House" in which I write from the perspective of my mother who describes how she became proficient in caring for Grant and using the insulin pump. My hope is that other grandparents and caregivers will gain courage in caring for a young pumper. MiniMed needed the guide written especially for European grandparents and caregivers, since in many countries technological devices such as the pump are rare and the caregivers have trouble becoming comfortable with the child's needs. It is so new that I have not even been sent a final copy yet, but it should be available very soon.
Please feel free to e-mail us at EagleMom@comcast.net.
God bless you in your circumstances
Tom and Julie Costakis
Copyright © 2009 Kids R Pumping.