Nicholas David Gusitsch
“Outtakes”. A snippet of thoughts to kick off this blog post:
T1D is complicated.
People misunderstand T1D.
We are lucky to have such good friends, families, and a strong little guy in Nicholas!
What I am looking forward to putting into practice, or continuing:
Staying positive and advocating for Nicholas/T1D.
Quote(s) that resonated with me this week:
Never give up.
Today is September 30, 2017. It has been 1285 days since Nicholas was diagnosed with Type 1 diabetes (T1D), at almost exactly 3 ½ years old. 1285 days is how long Nicholas had been alive from his date of birth on September 17, 2010 to diagnosis on March 25, 2014. From this point forward, he will always have had T1D for the majority of his life.
He really only remembers LwT1D (Life w/T1D). He does not recall walking up to the fridge and grabbing a drink of juice or walking up to the cupboard and grabbing a snack without a blood glucose check and delivery of insulin. He does not remember being in pre-school and playing with his friends and having snack without having to check numbers and balance his levels.
Now it is part of his life and who he is. Up to this point, we have had to educate people on his needs and tendencies. Now he is becoming a good self-advocate but this is hard for someone who is seven years old, trying to explain to other seven year olds why he has to have juice, or glucose, or sit out a few plays, or feels “shaky”, or needs a shot, or why he is wearing “those devices” on his body. There are many variables that play into his numbers and whether they go high or low. Food, exercise/activity, temperature, stress, growing, sleep (or lack thereof), mood, and many more that are not popping into my head as I type.
Looking back, we had a lot of learning to do on March 26, 2014. After spending the night in the emergency room and then a small hospital room, we had to be brought up to speed on what our new normal was going to be. BG (blood/glucose) levels, insulin, ketones, ketosis, diet and carbohydrates (not what they are, but how they physiologically affect you with everything that you eat/drink). How to test. Where to test. How to bolus. How to log numbers. How to portion food/drink. How to balance between long lasting (“the N”) and fast acting (“the H”) insulins. Who to talk to. Later came more learning and medical device companies: PDM (personal diabetes management), basal and bolus rates, Omnipod, Dexom CGM (constant glucose monitors), Solara Medical, Freestyle, and many more. We are fortunate to have good insurance, but we would gradually learn that it is another fulltime job to manage costs, bills, coverage, etc. while trying to do what is best for Nicholas.
As we left the hospital, came the reality that we were responsible for managing this life-threatening disease (more on that later). Almost like the feeling when you come home with a newborn and you reach for the nurse call button and realize, “you’re on your own to figure it out”. We were fortunate with our support network. Our endocrinologist Joann was/is amazing. I reached out to a friend Mike who has a son with T1D and him and their family have been a constant support. I bumped into a longtime friend, Mary Lou, who works at Danbury Hospital as we were leaving that next morning. I will never forget where we were and the look on her face when I told her why we were there. It was very telling. She knew many things that we had no idea about, but would soon learn. She came over a few nights later and helped us talk through the diet/nutrition part of our new journey (and has also been there to support us).
We met many people through events, charities, etc. The T1D network is strong, caring, and giving. We met another person (also named David) about three months after diagnosis who has a T1D daughter. He played wiffle ball with Nicholas, chatted with us, asked us our address and sent us a box full of supplies that he “thought would help”. They did. And so did the fact that we felt comfortable knowing we weren’t in this alone. He has also periodically checked in and shared some of the latest events, technologies and advocacy that has gone on around the world. It is great to know the level of work, volunteerism and dedication that is going into finding a cure for this disease.
And then, of course, there are our families. They have continuously helped and supported us through everything. There are many more people as well, but too many to list. Thank you to everyone who has been part of our journey up to this point.
As we consider T1D and its impact on all of our lives, we are fortunate. About a 100 years ago, this would have been a death sentence. Terrible. We are lucky to have the resources, the medicine, the network capabilities, etc. But that does not minimize the lethality of this disease. Two days ago in my office at work, a teacher was telling me a story about a former student who was 22 years old who just passed away in his sleep. He said he had type one diabetes. Immediately, I knew it was a hypoglycemic incident. This person had no idea that I had a son with T1D and I mentioned how closely that story hit to home. This is one of many stories that are all the same. Another colleague at my last job recently lost a cousin to T1D at the age of 25. We hear about these stories through people we know or through common friends.
This is where/how this disease presents a challenge. You may do everything right, or the same, and something may still cause a low bg. If you are not able to catch it, it may be too late. This crosses our mind every time we say goodnight to Nicholas. Some people wake up to their lows. Nicholas does not. We are lucky to have the technology to alert us when he is low. Technology is not always accurate, or fails. Often. Seemingly, always at night (or, at least that is how it feels :) ). Either way, we go to bed every night with this on our mind. This translates to about five good nights of sleep a month. That may not sound like a lot, but those five nights are AWESOME! The rest, we get through with a little help from our friends...
Besides a cure, if I had one wish with this disease, it may be that it had a different name. Those who live with T1D in their lives will know what I am talking about. The confusion between type one and type two diabetes. They are not the same. From a public standpoint, having the “same” name gives the impression that you can do something about T1D. Questions we here: “will he grow out of it?”; “can you manage his numbers by watching his diet?”; “he can’t eat that, can he?!”; “is there a medicine that he take that will help manage his numbers?”. Most of these are because as of 2015 there were 30.3 million people living in America with “diabetes” (according to diabetes.org). Of those, 1.25 million have T1D. That is about 4%. I could go on forever, but where do you believe that most of the funding, research, advertising, etc. go? It is a disservice to all those with T1D to lump them into a category with another disease that has different treatments, diagnoses, impacts, etc. It is worth noting that I know people with type two and I care/hope for them to have a cure as much as I do for type one. My point is, they are not the same...
Below are some links to people and organizations who are doing good for the cause:
Newman’s Own (100% of profits go to charity)
TypeOneNation (through JDRF, many companies here)
Nick’s Gang :)
Below are some pictures. Some tell a story in themselves. Some are just fun memories. Here are some of the estimated hard numbers on how many times Nicholas has been poked, prodded, stuck, etc. since he has been diagnosed (i.e., poor little pin-cushion):
1285 days x 12 tests a day (approx) = 15,420 “sticks”
1285 days - 90 days when we went to the Omnipod = 1195 / 2.5 = 478 pods
1285 days - 180 days when we went to Descom = 1105 / 5 = 221 Dexcoms
Now it is time for a little advocacy and public service announcement. Knowing the signs and symptoms of T1D can save a life. T1D can happen to anyone, at anytime, at any age (Saving Luke - Luke and Jedi - Fighting Type 1 Diabetes Together):
Fruity or acetone breath
Sudden bed wetting
Irritability (more than normal)
I write this because this is our life. I shared this much because this is a date/event in his life that will only happen once. Maybe Nicholas will read this someday and understand a pivotal moment in his life a little better. Hopefully by then, there will be a cure and we can all look back and “fondly” recall “how it used to be”.
Thanks to anyone who read this far. You are a true friend (Or family. Some family will read this far. :) ). Now, off to calibrate the dex...
Please feel free to contact or follow me:
Nicholas in front of some of his thousands of needles and medical devices.
Some of his supplies, devices and “statistics”.
The section of his closet that reminds of Nicholas, our little, playful 7 year-old boy. And, the section of his closet that reminds us that he has had some serious medical training at a young age.
A Day in the Life of…
Sometimes there are highs, sometimes there are lows, sometimes there is the dreaded “no data” (seemingly most often at night).
Sometimes there are level numbers. For a little bit. Often a roller coaster. And, a quick peek at some of tech challenges...
A look Back:
In the hospital and “day one” home.
Approximately 1 week before diagnosis (tired and skinny)...
March 26, 2014 - Getting ready to leave the hospital after diagnosis:
“Celebrating” one year:
“Celebrating” Year 2:
“Celebrating” Year 3:
And, a little fun along the way: