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.

 

 

I love when my students are OER aware

I’m grading drafts of final projects. 75 from my Junior classes. Students have to reflect on how they have learned and achieved our competencies…and use external sources to support their claims.

I am proud of our students when I see them mention accessing and using high quality OER.  For example, a student (image below) was struggling with Number Theory. Although he had quality information from the textbooks, he sought out more information from MIT’s OpenCourseWare.

Huzzah!  (Now if only our professors would reference them all the time)

 

Thoughts on #OER17

I have attended a handful of Open Ed conferences over the past few years.  I’ve participated as a faculty member, doctoral student, campus advocate, and presenter.  As with many Open Ed users, I wear many hats.  I’ve participated in and reported data for NGLC Open Ed grants, I’ve studied and done reports on Open Ed movements (#EDUPUNK, #DIYU (http://diyubook.com), etc.), I’ve created OER for my courses (and program), I’ve advocated for OER on my campuses, and even did my doctoral research on faculty innovation and adoption of OER.

Although I am a user, practitioner, and advocate…I’ve always felt like an outlier…until #OER17Maha Bali literally planted a seed in me first thing in the morning in her keynote. She spoke about how innovations are seeds.  We need to nurture our seeds in order to produce valuable fruit (but don’t offer one of those apples to a person with no teeth…unless you’ve brought a masher).

My colleague Emily and I presented after the first keynote. We received very positive feedback and comments, so my nerves calmed down after that.  I do need to stay on the clock though…oops.

The remainder of the two jam-packed days were a whirlwind of brains, brawn, and karaoke.  The conference size really allowed me to interact with Jim Groom (who I have been amazed with since he occupied Open Ed in 2011),  keynoter Diana Arce, and other amazing people from all over the globe.

I enjoyed sessions by FEMEDTECH, the Open Ed SIGCatherine Cronin (who also studies faculty OER usage), and the lightning talks (goats, and tigers, and bears…Oh my!).  For the first time at a conference I felt like the majority of the voices within and outside the sessions had feminist and social justice lenses.  All three keynote speakers were women from different cultural and academic backgrounds.  I think more educational initiatives could benefit from these voices and agendas. I know I did.  I now feel that there is value to my perspectives on OER that wasn’t there before.

Thanks to #OER17, especially ALT and Reclaim Hosting, I’ve decided to create my own domain and use it to continue to advocate for OER & OEP.  I am also planning a research study that expands on my doctoral research findings…just waiting on IRB approval. #Iwill!

My OER seeds were planted years ago. I now have the energy to continue to nurture those seeds and be mother nature.  I hope to have a fruitful tree by #OER18 that will nurture others and spread its seeds.  For now I have to catch up on grading. My courses don’t manage themselves.

 

 

 

 

 

 

 

Cheers

Cheers from London. The #OER17: Politics of Open conference has inspired me to finally create an individual web presence. This page and blog entries will be compromised of my thoughts on openness, recent findings, and whatever else emerges.

Feel free to reach out via email, twitter, or comment here.

Canal Boat Bookshop. Kings Cross, London, UK. April 2017