Wednesday, June 11, 2014

6 Months In

It's been six months since Buddy Boy was diagnosed with type one diabetes.  It has been a wild, exhausting, frightening, and oftentimes upsetting ride, but one through which we have learned so much.

Looking back, even though I was vaguely aware of type one diabetes before Buddy Boy's diagnosis and had a surface (like, not even scratching the surface) understanding of the disease, I realize how very little I knew.  I knew that people with type one diabetes had to check their blood sugar and take insulin shots or use an insulin pump.  But if I had even considered it, I would have thought that the insulin dose was a standard amount, like taking an teaspoon twice a day or some such.  I would have thought that, as long as the person with type one diabetes took his insulin, he was good to go until the next dose.  I just assumed that the disease could be managed perfectly, and relatively simply.  Even when Buddy Boy was diagnosed, that was basically the very well-intentioned and kind encouragement that I received from lots of people who either didn't have personal experience with type one diabetes or didn't have experience with type one diabetes in a small child.  So many times in motherhood, I've been taught and re-taught that I don't really know a struggle until I've experienced it myself, and this was just another lesson in humility.

I had NO IDEA about counting carbohydrates and dosing according to those numbers, correcting high blood sugars with extra insulin, treating low blood sugars with fast-acting sugars, monitoring blood sugars all day and all night.  I had no idea that a person with type one diabetes would feel bad (really, really bad) when her blood sugar was low or high.  

I think the movies had given me an idea of the possibility of diabetic seizures and that an insulin overdose could kill a person, but I had no idea that high blood sugars could also kill a person, and that insulin overdoses were a terrifyingly easy thing to have happen.  

You know that unsettled, sightly panicked feeling you feel when the baby sleeps too long or is unusually quiet?  Where you run in and stand over his crib, willing his little chest to rise and fall?  I had no idea that type one diabetes would give me that feeling on a permanent basis, that fear of SIDS would be replaced with fear of DIB (Dead in Bed syndrome).  

I had no idea that the most central considerations in our daily life and in any family decisions would become diabetes-related; that discussion of Buddy Boy's blood sugar would become the Mister's and my first conversation upon his return from work and the topic of many middle-of-the-night exchanges, and the first thing we talked about every morning; that babysitters or gym nurseries or vacation Bible schools or day camps would become largely impossible; that the hours I had to myself after the children's bedtime and before the Mister's return would be consumed with nightly sessions of research and reading about type one diabetes and its treatment.

And we are.  Six months in.  

This disease makes me so very, very sad for what it does to Buddy Boy, but I am thankful that the Lord has used our experience to draw the Mister and me closer, to cultivate more compassionate hearts in our family, to refocus our priorities, and to allow us to see the wonderful ways He works good in our fallen world.

Buddy Boy, with his "dolly" and his beloved Rufus, the bear with diabetes, waiting out a blood sugar low in the middle of the night.
I know there are so many things people deal with--which I've become more attuned to noticing as a result of our experience--and it's hard to keep up with all of them, and you probably have your own thing to deal with, but this is our thing, so I thought I'd spend a few weeks snapping a picture here and there to document daily life with type one diabetes.  The post turned out quite a bit longer than I expected (like, maybe it should be offered in chapter format?), but if you're willing to stick with it and if you are as unaware of the ramifications of this disease as I was just six months ago, maybe you'll pick up a new thing or two?  

Please remember that we are still new to this game ourselves, and are not medical professionals.  We're just parents trying to take care of our child.  I'm sure I'll look back in another six months or so and marvel at how much I had yet to learn!


OK, so the basic overview is this: 24 hours a day, we are fighting to keep Buddy Boy's blood sugar between 80 and 180 (a normal blood sugar for a person without diabetes is around 100).  Unfortunately, we are unsuccessful in that fight a whole lot of the time, due to the stage of the disease that he is in, his age and his extreme insulin sensitivity (even teeny tiny little smidges of insulin drop his blood sugar by 100-200 points; medical folks, we're talking 1/4 - 1/2 units!).  Buddy Boy is still in what is called the honeymoon period, meaning that his pancreas still produces some insulin.  Eventually--probably in the next few months--his pancreas will conk out completely and he will be totally dependent on injected insulin, but in the meantime, he's got these fits and spurts of insulin that his body produces. But most of the time, we don't know when those are going to hit, so they can cause us major problems.  As Buddy Boy grows and as his pancreas stops producing insulin altogether, we hope to have better control of his blood sugar.  But for now...we have a lot of lows (we regularly see numbers in the 40s, which are dangerous) and a lot of highs (we regularly see numbers in the 400s, which can also be dangerous if not dealt with quickly).  Both of these extremes make Buddy Boy feel awful...a low seems to sap all of his energy and leave him lying on the floor in a moaning puddle.  A high that lasts a couple hours or more makes him extremely irritable and agitated.  Even in his sleep, if he is high, he will cry out and thrash around in his bed.  Being super high will make him wet the bed.  And lemme just tell ya, trying to change an extremely irritable and agitated (and sleepy) child out of wet pajamas ain't nobody's idea of a walk in the park.  

So, how do we manage Buddy Boy's blood sugar?  It's a combination of monitoring the blood sugar levels and dosing with either insulin (to bring the blood sugar down) or sugar (to bring the blood sugar up).  

We check Buddy Boy's blood sugar by finger prick 6-8 times a day and give Buddy Boy 5-7 shots of insulin a day, depending on whether he has big snacks.  He gets one shot of long-acting insulin each day to cover the sugar released by his liver on a continuous basis, and the rest are short-acting insulin shots to cover the food he consumes.  We also give him at least one shot of short-acting insulin in his sleep, because his blood sugar naturally rises right after he falls asleep.  The amount of insulin we give him depends on what we judge his needs to be that day and how many carbohydrates he has consumed. His needs change based on whether he has a virus or infection of any sort, whether he's in a growth spurt, whether he had more or less exercise than usual, and what his pancreas decides to do on any given day.  And his pancreas hardly ever gives us advance warning.  So inconsiderate, that pancreas of his.

To help us with the monitoring side of things, Buddy Boy wears a continuous glucose monitor (CGM) 24/7.  The sensor has a little wire that is embedded under his skin and it takes a reading of the sugar level in his interstitial fluid every 5 minutes and sends that reading to a receiver that we carry around.  We check the receiver at least every thirty minutes or so during the day and probably at least six times after he has gone to sleep, far more than that if we've got a blood sugar issue on our hands.

Because the CGM is testing the interstitial fluid, rather than the blood, the reading is about 20 minutes behind real time.  So, for short-term decisions like insulin doses we still have to do finger prick blood tests, but the CGM gives us a wealth of information about what happens in between those finger pricks, as well as a prediction about where the blood sugar is headed.  It is tremendously useful in helping us prevent lows, especially when Buddy Boy is playing outside.  It's my best friend at the playground!

The CGM also helps me know when we are dealing with an actual behavior issue that needs to be corrected and when Buddy Boy is just behaving symptomatically.  Prior to the CGM, I would find myself in the ridiculous position of testing Buddy Boy's blood sugar before deciding whether to send him to timeout for some sort of aggressive behavior or temper tantrum.  Obviously, he still has to learn to behave well when he doesn't feel good, but my correction in those times is going to be much milder and more sympathetic, and more oriented toward getting him back to feeling good enough to act good.  With the CGM, I'm always aware of his general blood sugar level, which makes that part of our lives a lot more natural.

To do a blood test, we prick Buddy Boy's finger with a lancing device and squeeze out a drop of blood, which is then applied to the test strip inserted at the bottom of the meter shown above.  In just a few seconds a number pops up.  Well, usually it's a number.  This was a day where Buddy Boy went inexplicably high after breakfast.  That seemingly friendly little greeting means the blood sugar is so high that the meter can't read it, which means something over 600.  As it turned out, Buddy Boy was coming down with a cold, but he wasn't showing symptoms yet, so we had no idea that his insulin needs had increased so drastically.  Thus, the high.  Or, the HI.

This was an absolutely gorgeous day--probably the best we've had since diagnosis--which is why I took a picture of it.  Truthfully, his pancreas did a lot of its own work that day, which is why it went so well--our bodies do so many amazing things we take for granted...until they don't.  We've yet to have a day with numbers like this when we were in charge of the insulin production.  The 142 at the top is the current reading and the straight arrow means the blood sugar is holding pretty steady.
This was a couple nights ago, after supper.  Not a gorgeous day.  He was super high before supper, as you can see from all those dots at the 400 line, which is as high as the CGM reads, and then I gave him insulin, but he didn't eat all that much supper and he's also getting over an infection and has had some tummy troubles, so for whatever reason, he started to drop like a ROCK.  He was dropping about 50 points every five minutes.  The beauty of the CGM is that I knew what was happening.  When he was in the low 200s with two arrows straight down (which means falling fast), I took his blood and found that he was already at 109.  So, he had a juice box right then, which helped slow the fall, but when I tested his blood again 15 minutes later, he had still gone down to 49, so he needed more sugar right away.  Without the CGM, I would have had no idea he was actually in a quite dangerous situation and he probably would have gone lower than we have ever had him go before.  I'm quite thankful for this technology.  We had no idea how blind we were flying before we had it.

As you can probably guess, Buddy Boy's (and our) favorite part of diabetes management is treating a low...juice or candy, candy or juice.  What a delightful choice for a three year old!  But nighttime lows.  Ugh.  The Mister deals with most of the night action (testing blood, checking the CGM, injecting insulin for highs, treating lows), but when he is traveling or when we are traveling or when he needs to catch up on sleep, I handle the nights. 

Drinking juice or chocolate milk or eating Skittles in the daytime is fun.  For the first couple of months with diabetes, it was even fun at night.  Now, not so much.  If it's the only low of the night, Buddy Boy's usually pretty compliant about slurping down some juice.  But if it's the third low of the night, waking him at 2:30 AM to drink MORE juice, when he just drank some 15 minutes ago is not popular.

But when the CGM is saying he's still headed down after juice, we MUST get the sugar down the hatch.  Sometimes this means pulling his lips apart and putting Smarties in his mouth to dissolve.  

Sometimes, it just means a lot of tears and struggling by the light of a camping lantern.

On the flip side of that, the deepening of Buddy Boy's relationships with his siblings as a result of his disease has been a joy to watch.  Little Guy has learned how to do injections in an orange and just yesterday, checked Buddy Boy's blood completely unassisted.  If the CGM alarms and I'm not nearby, Little Guy will often bring me the receiver, as well as the meter kit and log book, and let me know I need to check Buddy Boy's blood sugar.  Baby Girl has a basic understanding of diabetes--she knows shots are for highs, while candy and juice are for lows.  She has declared the beeper in her toy medical kit to be a CGM and she reads off all kinds of numbers from it when she is playing doctor.  Both she and Little Guy have voluntarily had finger pricks and shots (with nothing injected, obviously) to experience a bit of what Buddy Boy endures.  Completely their idea!  And they all adhere to the same eating schedule and the same limits on snacks and such, so that Buddy Boy will never feel isolated inside our family.  As a silent recognition of all that, we occasionally let them have a piece of candy or a juice box, too, when Buddy Boy is treating a low.  Snodgrass solidarity!

Counting carbs is a huge part of managing Buddy Boy's diabetes.  If we don't know how many carbs he eats, we can't know how much insulin to give him.  I think this part will get easier as he gets older, because he will be more able to judge for himself what he is going to eat at a sitting.  As it is now, we have to guess at what his appetite is going to be like, serve out a portion accordingly, measure the parts of the meal that have carbs, and then dose accordingly.  Often, we wait until he is done eating to give him his insulin, because we just never know whether he'll just pick at a meal or ask for seconds.  Unfortunately, that means his digestion gets ahead of his insulin, so his blood sugar spikes pretty high before coming down, but it's the best we can do.

So, what this looks like in practice is that if we want to serve something like this...

...we separate out the noodles and weigh them, then the tomatoes, etc., and then put it all back together to serve.
Or, if we give him a bowl of cereal and he doesn't finish it all, we pour the remainder back into the measuring cup to get an idea of how many carbs he didn't consume from the measured portion we gave him.  Of course, when we're eating out, it is usually much more of a guessing game.  How many french fries did he eat?  What's in that fruit salad and how many bites of each type of fruit did he have? It can get a little complicated.

Every bite of food needs to be thought out and prepared for.  When we went strawberry picking, I figured Buddy Boy would eat a good many strawberries in the field and I knew the strawberries would be smaller than the ones we are used to counting from the grocery store, so I did a quick consult of my Calorie King book to find the carb counts and then kept a close eye on what was going in Buddy Boy's mouth in the field.  I try really hard to let Buddy Boy maintain as natural a relationship with food as possible, though, so while I was ticking off strawberry carb counts all the time we were picking, it was important to me that he not be aware of that.  He knows we measure his foods at home and check labels for carbs and ask for nutritional information at restaurants, and he should know that, because eventually he will take on doing all this for himself, but there are some things that just shouldn't be marred by carb counting.  In my opinion, a beautiful summer day in the strawberry fields is one of those!

Sick days are another thing we've learned about.  Thankfully, we have not had to deal with a stomach bug since diagnosis, but even other types of illness can be greatly complicated by type one diabetes.  I mentioned that viruses and infections often raise one's blood sugar (or, they can lower it--roll the dice!), but vomiting and diarrhea can cause severe lows, due to carbs not being absorbed.  How I treat Buddy Boy on a sick day now is very different from how I treated him before diabetes...I can't let him sleep too long or go without food or liquids with carbohydrate.  We have to check his blood sugar more frequently and do urine tests for ketones to make sure his body isn't being harmed by the toxic acids.  There was one little fever virus a couple months ago that really wouldn't have been a big deal without diabetes, but almost landed Buddy Boy in the hospital, because he just did not want to eat or drink anything and wanted to sleep all day.

And then there are the sick days caused by diabetes itself.  Here, an infection in a finger prick site, despite our every effort at avoiding such a thing.  An antibiotic has helped to heal it up, but of course along with strong antibiotics in small children come strong tummy issues.  Remember that non-carb absorption issue?  Soooooo, Buddy Boy has dealt with several blood sugar lows caused by a reaction to the medicine he is taking for an infection caused by the treatment protocol he follows for his diabetes, which is meant to avoid blood sugar lows and highs.  There are times when I'm tempted to feel like the poor boy just can't win.

But I know--I KNOW--that God is using this disease to work good for Buddy Boy and for others.  I've already seen some of that good.  There will be more.  And there is so much hope and consolation in that.

The CGM sensor has to be changed every 7 days, and while Buddy Boy says it is not particularly painful, he does not enjoy the process at all.  The insertion device is a little intimidating and the noises are kind of scary.  Watching the Ninja Turtles has been known to help.

Here you see his old sensor, which is about to be removed.

All the supplies for the change...the insertion device for the new sensor in the clear plastic sleeve on the left, Unisolve wipes to dissolve the adhesive of the old sensor, a Skin Tac wipe to help the new sensor adhere more securely, alcohol wipes for cleaning the old and new insertion sites, and Opsite tape to tape down the edges of the new sensor.

Old one's off and he's sensor-free for just a minute.

The adhesive for the new one is applied, and on Buddy Boy's count of 1, 2, 3 GO! we will insert and then withdraw the needle that embeds the wire.

New sensor in, transmitter attached.  After a 2-hour startup period, it will ask for two blood readings for calibration, and then it will be up and running for the week.

Tape keeps the edges down.

Thank goodness that's over with!

The wreckage...

And another deposit in the sharps container.

This is about a week's accumulation. I'm thankful that the Mister usually empties the sharps container for garbage day, because this visual representation of what my boy goes through every day is one of the saddest for me.

If you stopped by our house around 7:30 PM each night, you'd most likely find the counter looking like this.  I take a few minutes to work over our supplies each evening after the children are in bed...make sure there are enough alcohol wipes, gauze pads, and test strips in each meter pack; dispose of the sharps we used while we were out that day; add a few more syringes to the go-kit and replenish any sugar sources we used that day; change the lancets in the lancing devices; record in the log any blood sugar numbers or insulin doses from when were out; get us ready for nighttime testing and the next day's outings.

And every three months, you'd find Buddy Boy and me here, at the endocrinologist, for his diabetes checkup.  We had his six month checkup last week, and are very excited that we got approved to begin the transition to an insulin pump, which will probably be a 2-3 month process.  Contrary to what I thought six months ago, the pump doesn't come close to managing diabetes on its own, but it IS an awesome tool to have in the diabetic arsenal.  We are hopeful that with the teeny-tiny doses of insulin that are possible to administer through a pump, we will be able to keep Buddy Boy feeling better more of the time.  

Did you make it this far?  If so, you are AWESOME.  Thank you for taking the time to understand more of Buddy Boy's life!  Please always feel free to ask any questions at all.  I'm very happy to talk about type one diabetes and would love for people to know more than I did pre-diagnosis.  And if I don't know the answer, we can find out together!


Laura said...

i made it! even after all these years, i still don't like the process of taking the shot or putting in the infusion site, even tho it typically doesn't hurt. my left ear literally throbs when i start to do it (aren't bodies so weird?!?) and i had the same reaction looking at the pictures of JF's infusion. yick. but it truly does get so much easier and so much more routine, and they are continuing to make such great advancements in the technology. i think the pump will be an awesome help. actually one of these days i should probably discuss this all with you, b/c you surely have the latest and greatest information, and i'm working back in the stone age with my aversion to change and new technology. =) anyways, you guys are doing a great job navigating this!

Anonymous said...

So many emotions reading this post. I am so impressed with your strength and your generosity (sharing your journey and knowledge will undoubtedly help others, but I know it takes precious "free" time!). I also love how you emphasize the positive ways the diagnosis and treatment has impacted your family -- what a special group of people you must be, and what a positive way to view the situation. I have been a blog lurker since my first (and only) was born almost two years ago, but I wanted to comment now because I think it's so incredibly good and kind of you to share your experiences in the hopes that you will enlarge our understanding and possibly help others through a similar situation.

Anika said...

Love you, E! JF is so strong and brave, as are you. Thank you for sharing!

Anon said...

You are an amazing mommy and John Fletcher is an amazing kid. I am constantly in awe of your family! Much love. - Sarah Kate

Jessica C said...

Oh Bits, your (and JF and J's) strength and grace under fire are, as always, such an inspiration. And isn't it wonderful to have faith in our God who is always good - it changes our perspectives in the best ways. I'm so sorry JF has to walk this path, as he already has his difficulties to face, but I'm so glad he has you and J to guide him. And some wonderful siblings to level the field. Thank you for sharing from someone who misses you so terribly. Sending you so much love and support from North Carolina!!

Rachel Cagle said...

I agree with everything preacher woman said. I wish I was with you in more than just spirit!

BettieBoyd said...

All my love, but you knew that already!XXXOOO, Mama

Vir said...

Love you!!! So so much! Thank you for sharing!

Mary-Margaret Brown said...

Wow, I don't know what to say, but wow. God bless you. You are an amazing mama. I can't imagine what you are going through each and every day, and just how plain exhausted you must be all the time, but you do it all with such grace. We can all learn from you. Thank you for sharing.

Emily said...

Loved your post, Elizabeth, and I've been wondering how yall have been doing since JF's diagnosis so I was so glad to see the update! It sounds so completely overwhelming and even with all you know and understand now, it's just not perfectly controllable which I know much be so hard! I can't imagine how hard it has been for you to see JF suffer most of all, especially with his speach apraxia on top of the diabetes :(. I couldn't help but think that God much have special plans for him (and you) to have given him so many hard things at once! I have medical issues too and I feel like I have been getting my PhD for all the reading and research and lab testing and various treatments that I have been doing for years now! It's crazy how it can completely consume your life! I hope and pray that things will level out and get easier as he gets older and when his pancreas stops inerting itself :). And that the pump will also be a big help so that JF can have more times of feeling good than bad! You and J are so awesome and you're doing so much so well! Thank you for sharing and educating us! And ps. the part about A and J being so sweet and sympathetic to JF melted my heart! :) Nothing better than people walking a hard road right alongside you! Emily

Julie said...

Thank God JF is placed in your care!

Lindsay S. said...

You are amazing, Elizabeth! We are all pulling for your and your family. Keep up the great work. You are an inspiration.

Wanting What I Have said...

Wow! Amazing! My hat is off to you! I had a small idea of what it's like from friends whose daughter has type I, but I've never had such an in depth look. Y'all are amazing! And I keep thinking about your mama taking all of that on while she stays with you until baby arrives. Y'all are all precious and so brave!!