Continuous Glucose Monitoring

It's been 6 weeks since Sara was diagnosed and came home from the hospital.

6 weeks...

How can it be only 6 weeks? It feels like a lifetime ago. It's hard to remember what it was like to just go through life without carb counting,  insulin shots,  highs,  lows, and all the other things that go with having a T1d in the family. This disease doesn't just affect the one who has it, but the whole family. Decisions are made differently, because everything has, to some degree, be planned.

One way we are hoping to help Sara live a more normal life and not have to be constantly testing her blood glucose, is to have her on a continuous glucose monitor (cgm). We have chosen Dexcom as our cgm.

A cgm is a device that is placed on the skin and a wire is inserted under the skin. This wire reads the interstitial fluid in the skin and is converted to a blood glucose number. This number is transmitted to a receiver or iPhone that Sara will be carrying on her. The iPhone can then put this information into the cloud where Daniel and I can use an app to retrieve those numbers. The device takes a reading every 5 minutes. So we will be getting 288 readings a day. It will also tell us if her numbers are rising, falling, or staying steady and how fast they are rising or falling. This information will be helpful in so many ways. With the numbers being in the cloud, Daniel has the ability to check her numbers while at work or on the road. She can go out for the day and I can keep tabs on her.

There have been nights where Sara has been in the low 100's at bedtime. Great, she's in her target numbers. But, is that number continuing to drop from dinner, or is she starting to go back up. We don't know unless we test her again in another hour or so. With the Dexcom, we will be able to see the trend of that number and treat, or not treat accordingly.

During the night we get up with Sara at 2am. This requires an alarm to go off, us to get out of bed, go upstairs, get out her monitor, test her, give her a correction if needed, and go back to bed with the hopes of falling back to sleeping a timely manner. Chances are we also disturbed the sleep of the other girls in the room. With the Dexcom, the alarm will go off at 2 am, but we can reach for our phone and check her number. If it's good, back to sleep we go. If not we can go upstairs and give the correction or treat a low.

Another benefit of the device is that we can set alarms for her highs and lows. So if she hits these numbers between meals, during the night, while playing, or just doing normal activities, we can be alerted and treat as necessary.

Today was the big day of Sara's Dexcom arriving. Insertion went well and painless, so that is a big bonus. Here she is with it ready to go.

There is a 2 hour warm up before we can start seeing her numbers. After the 2 hour warm up, we calibrate her glucose monitor with the Dexcom and we start to see a trend graph start. Here is the last 6 hours of her numbers. How awesome is this information!

A Whole New Language

Having a t1d (type 1 daughter) has taught us many new things. One of these is a whole new language. Here is one of the Slang "dictionaries" I have used to learn and understand this new language.

http://www.sixuntilme.com/blog-mt2/blog_images/Q12011/SUM_Diabetes_Terms.pdf

Some of my favorites:

D-Mama: the mother of a child with T1D, who is not afraid to take the disease head-on. While D-Mamas may sometimes appear frightening to non D-Mamas, they are loveable and fearless. Never be afraid to approach them, as they carry valuable diabetes information (and glucose tablets)!

Rollercoastering: when blood sugar starts out high, then goes low … then goes high … and then goes low. Basically, your blood-sugar level alternates everywhere outside the normal range.

Diablandic: Sugar-free or diabetes marketed food that tastes horribly bland

Poker: Lancing device, also known as a “pokey.”

Real People Sick: The differentiation between bloodsugar issues and the common cold. Phrase slips out most often when the diabetic admits to not feeling well and must specify that it is not bloodsugar related.

Sleep-Drinking: The ability to consume juice while still actually asleep.

Sugar Baby: A name to call someone with diabetes, such as your daughter.

S.W.A.G. Bolus: Scientific, Wild Assed Guess bolus. This is where you use more instinct thandata to bolus an unexpected or uncalculated meal.

Time to Change the Lancet: Defined as any time when you change the batteries in your smoke detector, reset your clocks, or when the lancet starts to rust.

YDMV: “Your diabetes may vary.” Phrase used as a caveat after explaining how something affects your diabetes. ex. “Pizza makes my blood sugar spike, but ydmv.” 

 

Ketosis vs Ketoacidosis

In a previous post,I mentioned that Sara was in DKA when she was first brought to the hospital and diagnosed. Here is an article that tells the difference between ketosis, which some people use to lose weight, and ketoacidosis, which is a life threatening condition.

http://www.healthline.com/health/ketosis-vs-ketoacidosis#overview1

A Day in the Life of Sara

Here is a little insight into Sara's day as a Type 1 Diabetic

7:00a Dad wakes the kids and the family gathers for family worship

7:45a Sara figures out what she wants for breakfast. We do a carb count, check her glucose, do the math and give her her first injection of the day.

8:00a Sara is usually eating breakfast. She needs to eat about 10-15 minutes after her injection. That usually gives her enough time to make whatever she has chosen to eat that day. Lately her breakfast of choice has been vanilla yogurt, granola, and scrambled eggs. Sometimes she has an english muffin with her eggs.  A couple times a week she will add juice, but that really spikes her numbers before lunch and it's really not worth having to take extra insulin.

9:00a school starts. If she's not feeling well we may go lighter on the book work. The last couple of weeks she has been able to complete most of her schoolwork.

10:15a Snack time. In an ideal world, she really needs to have 2 hours between meals and snacks to have the insulin properly working. While we are at home, it is fairly easy to stick to that. Most of her snacks during school are 10g or less. We don't have to cover those 10g with insulin, so they are "free" carbs.

12:15p Lunch time is soon so Sara needs to plan her lunch. We do another carb count, check her glucose, do the math and do her second injection of the day.

12:30p Lunch. This varies from day to day. She really likes grilled ham and cheese with pineapple on the side. Sometimes Strawberries. Or maybe cucumbers with Ranch. 

After lunch she likes to run around outside. We have to keep an eye on her glucose numbers. Moderate activity can cause those numbers to go down very quickly. So we have a chart that helps us keep those numbers in a healthy range. Depending on the length of activity and what her glucose is at the beginning of said activity, she needs to eat so many carbs. So before she goes out, we do another glucose check. Then when she comes back in we do another. If she is in target, we are happy. If she is high, we know that activity doesn't always mean her numbers will come down immediately. Sometimes there is a delayed reaction. So we'll test again in an hour or so. If her numbers are low, we have another chart to direct us what to do to bring her back up to target. If she is below 70 we treat with 15g of fast acting sugar like 2 packs of smarties and retest in 15-30 minutes. If she is low, but above 70, we can give her a 15g snack such as a granola bar. It doesn't need to be fast acting, but something to bring her back up to a not-so-low number. I have an alarm set for 3p so she can have a snack as needed to hold her until dinner.

5:45p Dinner will be soon. Once again we measure out her meal, carb count, check glucose, do the math and give her the 3rd injection of the day. When she is finished we begin to gather at the table. By the time we sent and pray over the food, the 15 minutes have passed and she can eat.

8:30p Time for her long-acting insulin injection. This one burns a little. A trick one of the nurse taught us is to numb the area with ice. That seems to help quite a bit. Once again we will do a glucose check. If her numbers are high we may give her 1/2 of a correction dose. if they are low, she needs to have a hard carb snack. Usually a few crackers or some nuts. 

2:00a Daniel's phone alarm goes off. Upstairs we go to check her glucose again. Usually it is in a safe range and we just go back to bed. A few times it has been too high and we have had to give 1/2 a correction dose. We also have had a low we had to treat. A pack or two of Smarties (15g fast acting sugar) and sit up for about 30 minutes and then retest. Go to bed if it is ok, or give a bit more sugar if it is still low. There have been a few times when we have gotten up again at 4a to check again. 

This is just a small snapshot of her day. It doesn't take into consideration the emotion, the frustration, the tiredness, days of sickness, days out of the house, fellowshipping with friends, church, or any of the other variables that life will throw at us. What works one day, does not work the next or the next. This disease doesn't sleep and neither can we. Every day we have to be on our game. No resting or taking it easy. This her life and if we are neglectful in her care, the price will be big. We aren't willing to take that risk. with our precious daughter.

1 Month Ago

1 month ago - February 28th - our lives changes forever. 

The emotions associated with that day are still very fresh. The tears still well up in my eyes when I think of those first days. The first emotions were fear of the unknown and the urgency in which the ER team came around her. Usually you have to wait to be seen by the ER doctor after the nurses have been in to take vitals. Our ER doctor was waiting for us in the room with 3 nurses and 2 IVs already on the pole along with insulin to piggyback. The first things out of her mouth were notifying me that they had already called Children's to see if they had an available bed in the PICU. That will put fear into a parent.

After the initial shock wore off,  my fighting spirit kicked in. I needed to be strong for Sara and advocate for her as needed. I asked question upon question and when I wasn't asking them, Daniel was. We wanted to know everything and the doctors and nurses were kind to us and tried to explain everything they were doing. We were blessed to have wonderful doctors and nurses the whole time Sara was hospitalized.

I still have times when I just break down. especially when I think of her future. While it is true that she can do and be anything she wants, there are also limitations. Yes, she can drive, but because she has a condition that can cause blackouts, she has to have a waiver from her doctor. Yes, she can get married and have children, but she can't have a home birth. This disease will affect EVERYTHING she does and every decision she makes for the rest of her life.

1 month ago - our lives changed forever.

We are stronger.  I never would have thought that I could give my own daughter injections multiple times a day. I don't like needles and I hate having to hurt my daughter, even if it is just feels like a pinprick. Yet I have had to give her over 112 injections in the last month. She has pricked her own finger over 180 times in the last month. That's only in 1 month and she has a lifetime to go. We may cry lots of tears and endure heartache, but we are stronger because of it. We will not let Type 1 bring us down. We will fight and we will fight until there is a cure.

1 month ago - our lives changed forever.

Our faith is stronger. God knew from the beginning of time that our daughter was going to have this disease. He knew the day she was going to go into DKA and be hospitalized. Not one part of this was out of His control. Type 1 is making us stronger, but not because of anything we are doing. We don't have to fight this disease alone. We have days that we feel overwhelmed and feel alone, but we aren't because God is carrying us through these hard days and He will be there right beside us forever. 

Victor Garber on T1D

Articles on Type 1 Life

Here are some articles that give a little bit of insight into the life and thoughts of diabetics and their families.

Tips for Type 1 Parents
http://www.healthline.com/diabetesmine/tips-for-type1-diabetes-parents#6

"When children are first diagnosed, parents are exhausted, running off little sleep and raw emotions with no light at the end of the tunnel. They are in education overload, having to learn so many things to take care of their child and keep them alive. They frequently get no breaks because there are usually few people who can take over care for a child with diabetes. Even having a night out with a sitter is difficult."

What Are D-Moms made of

http://www.ourdiabeticlife.com/2015/05/what-are-d-moms-made-of.html

"D Moms are made of encyclopedias:  Information?  We have retained it.  We are the go-to information source for our children's health.  We are the experts.  Yes...you can site that."

What Type 1 looks Like

http://www.ourdiabeticlife.com/2015/11/type-1-diabetes-looks-like.html

"It looks like regular people living regular lives. But nothing is regular. Every moment is touched by this disease. No days off. What is eaten, what is done, where is traveled, it is all touched by blood sugars and insulin."

Sometimes vs Most of the Time

http://www.ourdiabeticlife.com/2016/11/sometimes-vs-most-of-time.html

"Sometimes, I’ll look at a pile of bloody test strips on the dresser, (aftermath from a long night,) and I throw up a little in my throat. It is the grizzly reality of our life. Sometimes, there can be 20 test strips lying on the boys' dressers from the evening before and a couple checks through the night. I pick each one up to throw in the garbage. It hurts my heart as some of them stick to the dresser. Tears come as I wonder if this will always be our reality. Wondering if there will ever be a cure. The image throws me…and validates all my anger towards this disease. I think of their callused fingers and I want to roar like a mother lion that is protecting her young. Sometimes."