T1D, Science, JDRF, and Life

I’ve never written this story out until now.

On February 17, 2015 my 5 year old son John was admitted to the PICU of Connecticut Children’s Medical Center (CCMC) because he was in Diabetic Ketoacidosis (DKA).  DKA occurs in people with Type 1 Diabetes.  Type 1 Diabetes is an autoimmune disease caused by the pancreas being attacked…not by the consumption of sugar, poor diet, or lack of exercise. Thanks to science, Drs. Fredrick Banting & Charles Best, and JDRF…my son has the chance to live.

Throughout the previous four days before diagnosis, he was getting progressively sicker and sicker.  He was vomiting, weak, very grouchy (more than usual), and frequently urinating (which is not like the normal camel he is). It was a holiday weekend and I waited until the morning of the 17th to bring him to the pediatrician because many of the walk in clinics by us don’t see children and I thought they would just send him home for a “stomach bug”. The picture below is him snuggling with older brother Lucas.

When we arrived at the pediatrician he could barely walk in.  I asked the PA Kate to check his blood sugar because I remember my dad being very grouchy when his BG was high or low (he was T2).  Other than that, I was so naive.  His BG came back as 325 (I found out  later than many children are diagnosed with BG in the 500+ range. Imagine a BG of 1100!).  I immediately started to cry. I knew at that moment he had diabetes, but I knew nothing of DKA. I thought they could give us a script for insulin and send us home.

I was so wrong.

We were rushed by ambulance to CCMC. While in the ambulance, I had to call my husband who was working in France  and he rushed to the airport to get the first flight out to JFK.  I had to call my stepson who was watching my infant son and coordinate care for both of them.  I was panicking, yet trying to stay calm for my 5 year old who was barely conscious.  The EMTs could not even get an IV in his arm. I could see their concern.  Once we arrived at CCMC we were almost immediately were taken up to the PICU.

In the elevator we were surrounded by a large medical crew including a social worker who kept asking me if I needed anything.  I was probably rude, but I asked her to leave me alone so I could focus on my son.  As soon as John entered a room in the PICU he was hooked up to more monitors and IVs than I could imagine was possible.  He was barely breathing and had Kussmaul Breathing. The body is forcing the excess sugar out through the lungs because it has no where else to go at this point.

To learn more about DKA, you can watch this video:

DKA is often misdiagnosed or diagnosed too late, causing brain damage or death.  It is diagnosed as a stomach bug, strep throat, or an UTI.  Every few minutes John had neuro checks and vitals taken.  I really knew this was incredibly serious when the PICU nurse never left the room.  For the first 24 hours, he had a nurse in the room at all times. He was put on a mixture of insulin and electrolyte replacement. Slow and alternating drips of both in order to not shock his body. After the first 24 hours he began to improve.   He began to breath more normally and become alert.

My husband had shown up, which calmed me down.  I was able to go home, shower, and grab my laptop because I still had work to do for my doctoral program & courses I was teaching.  We were unsure where the future would take us.  We had to learn all about caring for a child with Type 1 Diabetes.  Luckily I was very comfortable with checking BG, administering insulin, and tracking carbohydrate intake.  I had helped my father for many years, even though T1 & T2 are different.

After a few days recovering, we headed home.  Our days and nights have never been the same.  We used to check his BG 8 times a day.  Now he has a Dexcom Continuous Glucose Monitor (CGM) that helps us monitor him without having to poke him so much.  We still have to inject him with insulin at least 5x a day with two different kinds of insulin- Humalog for short term and Lantus for long term use.  There are no “good” or “bad” days, there are just days.  They are never the same.  It’s a roller coaster that you just have to ride.

There are millions of families just like us.  We “manage” this disease all day, every day…until there is a cure. Some families can’t afford the high price of insulin, which makes me so angry because Dr. Banting sold the patent for insulin to the University of Toronto for $20 so that patients could get it.  Prescription reform is another post.

Until a cure is found, we will continue to support medical research groups and JDRF so that John can have a better quality of life.  Right now, John’s school is doing JDRF’s Walk to Cure Diabetes on April 28, 2017.  His fundraising page can be found HERE. 

For now we will continue to celebrate life, science, each other, and all the new technology that helps him.