In March 2015, at just 10 months old, Brooks was diagnosed with Type 1 Diabetes. A chronic autoimmune disease in which the immune system attacks the cells in the pancreas that produce insulin. There is currently no cure for Type 1 Diabetes, which means that in order to survive he is completely dependent on receiving insulin through injections. It is not known why he developed it, but we do know that it has nothing to do with his diet or from eating too much sugar, which are common misconceptions.
The morning of March 4, 2015 Brooks woke up and was not his happy, smiling self. He was agitated, cranky and lethargic. As the day progressed, Brooks seemed to be getting worse and his breathing became increasingly labored and rapid. One of his siblings was just getting over a cold so we initially thought that perhaps he had caught it as well. We correlated that with the symptoms that he had. Once Aaron got home from work, we decided Brooks needed to be seen by a doctor, but the pediatrician’s office was closed at this time, so we opted to take him to the emergency room at Toledo Hospital. I loaded Brooks in the car and set off for the hospital while Aaron stayed home with Brooks’ two older sisters.
When we arrived at the Emergency room, there was a wait, but because he was a child that seemed to be having labored breathing, they got us right in. When we got back to the triage room the nurses were checking him over and asking all of the regular questions about what was going on, and when symptoms started. I told them that the symptoms had just started that morning, and assumed he was simply coming down with a cold. Meanwhile, Brooks laid on the exam bed just whining and moaning as if he was in pain. Finally a doctor came in, and was asking all of the same questions as she checked him over. Then she asked the million dollar question that up until that point I still had no idea was a symptom “have you noticed an increase in urination or wet diapers or thirst?” Thinking about it I realized that he had been having really wet and full diapers through the night. However, we had just chalked it up to the fact that he was simply growing and got a bottle at bedtime, so we figured that was the cause. Then she asked the nurse for the glucose meter and did a finger poke. At that point, I was holding Brooks and trying to comfort him anticipating the doctor to tell me that it is simply a virus or a bug that will go away soon. I was in no way prepared when she looked at the meter and said that his sugar was in the 600’s. She then proceeded to tell me that “your son is diabetic”. As soon as she said those words I broke down and asked them how that could happen, and did we do something to cause it. They assured me that it was nothing that we did, that Type 1 is an autoimmune disorder and not caused by anything we did or didn’t do as parents. It turns out that Brooks was suffering from Diabetic Ketoacidosis. This is a serious condition resulting from extremely high glucose levels and not enough insulin to help convert the glucose into energy, which then results in the blood becoming acidic as the body begins to burn fat for energy instead of the glucose.
Once he was officially diagnosed, the nurses scrambled around trying to find veins in our poor little guy to put in an IV, and all the while his condition was deteriorating before my eyes. He looked so disturbingly fragile, pale and limp. All he could do was lay there whining and moaning. The nurses continuously worked on him trying to get an effective IV placement but they could not get one to stay. He was poked in the arms, legs and hands all while screaming and being held down by a nurse. I felt so helpless. After thirty minutes of failed attempts with the IV we were taken up to the Pediatric Intensive Care Unit (PICU) where they immediately resumed the effort of placing an IV. Ultimately, they had to insert an IV into his neck. Once it was in they were able to start administering fluids and insulin to help slowly bring his glucose level back to a normal range. After the IV was placed, I was able to hold him, and it was so scary how seemingly lifeless he looked at that point. He slept with me holding him that night.
(Brooks on the day he was Diagnnosed)
We sometimes think back to what might have happened had we not decided to take him in. It perpetuates a very sick and uneasy feeling. The days following diagnosis consisted of doctors and staff trying to explain Type 1 Diabetes, how his life (and our family’s) would change and reiterating the seriousness of the disease. Brooks stayed in the PICU for two nights, and was then transferred to the regular pediatric floor. Here they were able to pull his IV and began administering his insulin via injections. Nurses would come in his room every three hours to poke his finger in order to check his glucose level and to give insulin injections, if needed at that time. Often times the staff was not used to seeing somebody so young diagnosed with T1, so they wouldn’t know exactly what to do. There was one other child that had just recently been diagnosed that was Brooks’ age. They were the youngest children diagnosed that the staff had ever encountered at Toledo Hospital.
We talked more with an endocrinologist that tried to comfort us and teach us about all of the advancements that have been made in the field of Type 1, and the technology that is currently available to help. He did an amazing job trying to make us see that Brooks can live a full life and can do anything that any other child does, but we just have to plan and be prepared at all times. We learned about all of the tools that are available, the different insulins that he would be on, what each one did and how often to give it. We also talked to a dietician about learning to count all of the carbohydrates for every meal that he would eat.
One of the tools the doctor talked to us about, and that we wanted to get as soon as possible is called a Continuous Glucose Monitor (CGM). This little device has a thin wire, called a sensor that gets inserted under the skin and is connected to a transmitter which sits on top the skin. It stays on the body and continuously tests the glucose level in the fluid under the skin. The glucose levels are then transmitted to a receiver so that we can see his glucose level at any time. However, the most important aspect of this device is that it can tell if his levels are changing up or down, and the speed at which they are changing (steady, increasing/dropping slowly or increasing/dropping rapidly). This device is a game changer and we cannot imagine managing this disease without it. We were extremely lucky that we were able to have one placed on him the same week he was discharged from the hospital (this is not typical). The sensor does have to be removed every seven days and a new one inserted.
(Brooks wearing his insulin pump on his left arm and his CGM on his right arm)
It has now been almost a year since Brooks was diagnosed. A year that has been a daily rollercoaster of emotions. There have been many good days, and some bad days along the way. First thing in the morning when he wakes up, we have to poke his finger to check his blood glucose level. If it is above a certain number he has to get what is called a “correction”. A dose of insulin specifically to bring down that high number. Whenever he is going to eat something, we have to read the label, figure out the serving size, how many carbohydrates are in that serving, and then measure it out for him. He then gets an insulin dose based on the number of carbs that he is going to eat. Brooks is a toddler, that often times will not eat all of his food, so if he doesn’t eat it all and has too much insulin in his body, his sugar will drop. It is a vicious cycle. He can go from extremely high to extremely low in a very short period of time. When he is having a low (anything less than 80 when tested), we have to give him some form of quick acting carb in order to raise his level back up. There have been more times than I can count that things like juice, crackers, cake frosting or fruit snacks have literally saved our son’s life. The fact that Brooks is a toddler makes things extremely complicated. He is constantly hungry, and always grazing and eating snacks. He just recently got put onto an insulin pump, which helps minimize the number of shots that he gets, but before that he was getting up to ten shots a day because of needing insulin each time he ate. TEN shots! The ten shots a day are not including all of the finger pokes that he gets. His sugar is checked before he eats, two hours after eating, bedtime, and also through the night if his CGM is reading that he is low. With his pump, he is still getting a shot, but it is only every three days when we have to change the location of it on his body.
The insulin pump is tubeless and is controlled via remote. The pump is able to store all of the various inputs that go into calculating how much insulin Brooks needs at any given event such as target glucose levels, corrections factors, insulin to carb ratios, hourly basal rates, etc. We enter his blood glucose level and the number of carbs he is going to eat and the pump calculates and administers the dose. Over time the pump should help to better control his diabetes.
Tools like the insulin pump and the CGM help us manage but it’s an imperfect situation and is more of an art than a science. Diabetes is consistently inconsistent, which causes a lot of frustration, fear, worry and tears. So, while we have two great pieces of technology that are helping us along in his journey, we are mindful that they are not foolproof and they can break or malfunction. Knowing this, and knowing just how quickly Brooks’ blood sugar levels can drop, we set our alarms and get up every hour of every night to see what his CGM is reading so that we do not miss a low. There have been countless nights that we have had to wake our sleeping babe up to force him to drink a bottle or eat fruit snacks. During times when he refuses to eat or drink, we have to resort to putting cake frosting into his mouth so that it will be absorbed. Nighttime is the scariest part of caring for a type 1 diabetic and especially someone as young as Brooks. This is the primary reason we are raising money for a Diabetic Alert Dog. Why are we raising money for a diabetic alert dog?
Nighttime is the scariest part of caring for a type 1 diabetic and especially someone as young as Brooks. This is the primary reason we are raising money for a diabetic alert dog. When a person’s blood sugar level gets too low it can be extremely serious and can cause seizures, brain damage and even death. Because Brooks is so young, he is unable to communicate to us or understand when his blood sugar is getting too low (or too high). He frequently will have lows at night which we have managed to catch because of his CGM and our constant monitoring. However, it only takes one time for the Bluetooth to fail, the wifi internet connection to go out or for us to sleep through an alarm. A diabetic alert dog will help with this and will serve as another line of defense. The dog is trained to smell the chemical changes in Brooks’ body when his blood sugar gets too low or when it gets too high. When the dog recognizes the high or low blood sugar, it will continuously alert us (pawing, barking, etc) until we acknowledge it. Diabetic alert dogs have been known to consistently sense a high or low up to twenty minutes sooner than a CGM. Those twenty minutes can be vital, and an example would be one morning recently, Brooks’ CGM was reading that his sugar was 89, but when he got up and we tested, his finger poke actually showed that he was really only 59. Had he continued to sleep and we relied solely on the CGM, it is hard to imagine how low he could have gone, and how differently the outcome could have been.
In order for a dog to possess this ability it must go through extensive training and be exposed to a myriad of situations so that it can perform its job in any environment. The dogs are trained specifically for each family’s situation. For instance, if there are other kids in the family, other animals, will it be out in public, any recreational activities that the family does (hiking, being on the water) etc. The process generally takes between 12-18 months to get the dog. As one might imagine, all of that time and training is very expensive. The cost of the dog, training and delivery is around $25,000. If you are interested, you can find more information about diabetic alert dogs at AlertServiceDogs.com
. Although our primary interest in obtaining a dog for Brooks is to help with nightime monitoring, the dog will be permitted, by law, to accompany Brooks anywhere he goes. Because the dog trainers select a dog to best fit our family’s lifestyle, the dog will even be able to accompany us on future hiking, camping and backpacking trips! The dog will become the seventh member of our family.
One question you may be asking yourself is why if we have a CGM do we need an alert dog? My answer is because we want to do everything in our power to save our child’s life. Yes, a CGM is a wonderful piece of technology, but technology can fail, and there is a delay in the readings. A diabetic alert dog is real-time. That time lag from a CGM can be vital if his gluose level is dropping drastically fast. The dog can pick up on that before the CGM can alert it for us, and almost always he will be significantly lower than what the CGM is reading if it is a rapid drop. Most importanly, the dog will wake us if Brooks’ sugar gets too low.
We would like to utilize every tool available in order to bring a little peace of mind to all of us.
Thank you so much for reading Brooks’ story. We hope this story has inspired you to share it with others to help with our efforts and to raise awarness for T1D. Donations are greatly appreciated and mean more to us than we could ever express. You can donate directly through this website if you would like to receive a tax deductible donation. Go to the homepage, you will see our Paypal donation button, just put Brook’s name in the “donation for” box and the donation will go directly to help pay for his Diabetic Alert Dog! If you are unable to donate, please consider sharing Brook’s story.
If you have any questions about Brooks or about the diabetic alert dog or process to get it, please do not hesitate to ask us!
Our deepest appreciation and thanks,
Aaron, Ashley, Laila, Scarlett, Brooks and Briar