Christian's T1Dog

Hello! This is our little T1D (Type 1 Diabetes) Warrior, Christian, who has been fighting this terrible chronic auto-immune disease since he was only 11 months old.

DIAGNOSIS

Around 2:00AM on Sunday, April 29, 2018, I took Christian to the local ER because he had been sick for a few days with what the doctors thought was just a bad ear infection from a cold. Over the course of the few days leading up to that, he had become extremely lethargic, was drinking a ton and peeing through diaper after diaper. After antibiotics weren’t helping and he was getting worse by the hour, I called the on-call nurse on Saturday evening who said he should be fine, as long as nothing else developed. Throughout that night and into the early hours of the morning, he started throwing up, his breathing became extremely labored, his heart rate was super high, his lips started to turn purple and we knew he couldn’t wait until Monday to be seen. While Jonathan stayed home with his older brother, thinking I’d be home by morning with some meds and a refreshed baby, I drove Christian to the local hospital where they spent a couple hours trying to figure out what was going on with him. Finally, a nurse with a T1D son told the doctors to check his blood sugar and the glucose meter errored out because his blood sugar was so high. His blood was so thick from the glucose content being so high that his little heart was struggling to pump blood through his veins, and he wasn’t getting the oxygen he needed. After life flight was denied due to high winds, we took a rough 2-hour ambulance ride (they weren’t sure whether or not he’d survive) to the children’s hospital in Danville where he was rushed to the PICU and his blood sugar read almost 900 (the normal range for a non-diabetic person is 80-100). He was diagnosed with RSV, rhino enterovirus and parainfluenza 3 virus and we were told he was in severe diabetic ketoacidosis and that he most likely had Type 1 Diabetes.

We experienced floods of emotions over the coming days/weeks/months/years. Initially, shock and confusion and heartbreak for our little guy. Denial (although we knew it was true) that this could be happening to our precious little baby, who couldn’t even walk or talk yet. Anger… helplessness.

It was the scariest week of our lives. We were told that T1D is a “silent killer” and that it was a good that we took Christian to the hospital when we did or he may not have woken up that Sunday morning. God was definitely watching over him.

Once the doctor’s got his blood sugars back in range, he started to feel more himself again and was right back to the happy, silly little baby he was before getting so sick. Once it was confirmed through lots of tests and poking and prodding that he had Type 1 Diabetes, life changed drastically for our whole family. We spent about a week at the children’s hospital learning the ropes and what our new life would be like – counting every carb, diluting insulin so that it could be measured in small enough doses for his tiny body, calculating and administering shots, frequent blood sugar checks, learning about devices available to help, and setting up in-home nursing care so we could keep working and return to our “normal” lives.

ADJUSTING TO OUR “NEW NORMAL”

I joined a LOT of groups over the next several months, read a lot of articles, books and advice from other T1D parents, and tried to learn everything I could and share it with Christian’s other caregivers so that we could all take care of him the best way possible now that we were all trying to manage this chronic, life-long auto-immune disease. Christian has had an AMAZING care team from Day 1 – endocrinologists, nurses, family willing to learn how to help care for him – we are very fortunate in that aspect.

It made it a LOT harder that Christian was so young at diagnosis and couldn’t communicate how he was feeling to us for so long. (Even now, that can be very hard – and impossible when he’s asleep). He has just recently started to recognize feeling some of his lows, but not all of them, and not always before he is out of his acceptable range. Over the years, we’ve found all kinds of great tips and tricks to better manage his blood sugar and – overall – long-term health. Good management is crucial for lifelong health for a T1D person, but short-term blood sugar issues can be super scary and even deadly. We are constantly learning and growing and figuring out how to manage this horrible disease a little better each day. Which brings me to….

OUR NEXT STEP…

After years of struggling with the limits and frustrations of technology (while great most of the time!) and after lots of research, we’ve decided that a Diabetic Alert Dog (DAD) would be another great layer of protection for Christian – especially since he won’t be able to manage his own care still for many more years to come. This DAD will be trained to alert us (and Christian) whenever his blood glucose is going too high or too low based on his smell! How incredible is that?!

The DAD will alert us up to 30 minutes faster than Christian’s Continuous Glucose Monitor (CGM)/Dexcom that he wears on his body at all times. Since the DAD alerts so much sooner, it gives us a chance to fix the problem, before it becomes a really big problem or a medical emergency – or worse. Technology – as wonderful as it is - DOES fail and Christian’s diabetic alert dog will help look out for him and keep him safe when that happens. In the 4.5 years since his diagnosis, we’ve have had to wake Christian up in the middle of the night hundreds of times and treat him for some pretty scary lows dozens of times that were much worse than the Dexcom told us they were. Any blood glucose level under 70 is considered dangerous. And it can change FAST because Christian relies on fast-acting insulin to help him stay in range – too little can cause extremely high blood sugars and too much can kill – it’s a very difficult balancing act.

Sometimes Christian is symptomatic when his blood sugar is low and other times he could be running around playing and not even know it or mention it until it becomes an emergency – there have definitely been a few scares where we thought we were going to need to use his emergency glucagon shot (a hormone that releases stored glucose in the liver, to bring blood sugar up rapidly. This can be life saving, but also is dangerous for several days after use because the liver is depleted and the shot will be ineffective due to glucose not being available for release).

Every severe low in the night is a chance of Christian not waking up.

Every technology failure is a chance of him having a seizure and ending up with brain damage, in a coma or ending up in severe diabetic ketoacidosis again.

Hopefully, his diabetic alert dog will catch these things and alert us before it gets that bad.

A Diabetic Alert Dog is very expensive, as much as $30,000! We know and understand that this is a lot of money, but there is no price tag on our son’s life and we would – and will – do anything we can to protect him in every single way we can. We believe this DAD will be an extra layer of protection that may save his life one day, so that makes it worth every penny. So here we are. A bunch of research, prayers and a whole lot of faith later!

A Quick Breakdown of Funds Being Raised:

- $24,000 for 12-month training program

- $3,500 for dog

- $2,500 for travel expenses related to getting our DAD

We have researched and decided where to get Christian’s DAD from and are getting super excited! We are getting ready to sign a contract and get Christian placed on the waiting list. The proceeds we raise will go towards the cost of Christian’s scent-trained Diabetes Alert Dog, our ongoing training, and funds for traveling across the country when it is time for us to get our DAD.

A LITTLE BIT ABOUT TYPE 1 DIABETES

Before he was diagnosed with T1D, we hardly knew a thing about it. Just in case you don't either, let me tell you a little bit. Type 1 Diabetes is an autoimmune disease that makes a person’s pancreas stop insulin production (it has nothing to do with their diet and exercise). It cannot be cured and diet/exercise won't fix it. Christian’s body can no longer make insulin, so now his life depends on receiving insulin from shots or an insulin pump. He got 6-12 shots per day for the first 2.5 years post diagnosis and then switched to an insulin pump in December 2020 to alleviate some of the poking and make things a little easier on everyone. Christian is such a brave little kiddo and we are so proud of how well he handles all the pod changes and Dexcom changes now! Insulin keeps his body from going into DKA again and keeps him alive, as well. We all need insulin to survive.

Despite all the work Christian’s care team does to keep his levels in range, life with T1D is still a roller coaster. Christian can eat the same thing at the same time every day with the same dose of insulin and his blood sugar would still vary – so many different things can affect his blood glucose levels – activity level, hormones, stress (sometimes it feels like if the wind blows the wrong way even!). High blood glucose levels can cause long term damage to his organs and many other complications. Low blood glucose (which is the scariest part) can lead to coma and death.

For a diabetic, lows can happen suddenly and for no reason at all. Our biggest fear is that Christian will have a severe low at night while we are sleeping and not wake up so we check on him about every hour and a half in the night. We worry that technology may fail or we might sleep through an alarm.

Christian’s diabetic alert dog will be an extra layer of protection, especially at night! Any physical activity can cause a sudden and quick low. Now that he’s much more active than when he was a baby, lows seem to happen much more frequently and much faster. We know a DAD can allow him to be more of a normal little boy – being able to play and stay safe because his DAD will let us know as soon as he starts going low – OR, if his pump fails and he starts to go up (which happens, too).

With the help of your generous donation, Christian will be able to have more of a normal childhood and will have extra protection as he lives with T1D. We all truly appreciate any support you provide, whether it is a donation or a share to help us get this out there! Please help us get a Diabetic Alert Dog for Christian by donating or sharing!

Sincerely Grateful,

Megan & Jonathan VanNoy