The Scariest Moments

The Scariest Moments

(IE: I Love Our Dexcom)

      First, let me say that the Continuous Glucose Monitor (CGM) is one of the best inventions ever. The Dexcom G4 is probably the best of the CGM’s currently available in the US. When your kid is a type 1 diabetic and cannot tell you when they feel high or low, aside from testing them a hundred times a day, a CGM is the only way to go. Luckily our insurance covered it no problem, so we had our CGM training in under a month after diagnosis. Since then, it has literally saved her life more than once.

      But the first and scariest time was on Memorial Day, 2013. She normally naps about 2 hours, starting immediately after lunch. So I fed her the normal carb amount (then 30-35g), gave the normal bolus, and put her down. She was in the 120’s before lunch and had a medium range glycemic food. About 45 minutes into her nap, her Dexcom alerted that she was going low. (We have it programmed for anything below 90). I hated to wake her up to check her blood since she generally won’t fall back asleep for naps, but the trend was going down. Better safe than sorry! So I trudged up there, checked her blood, and had my first mini-stroke. It was a 44! I ran back downstairs for the insta-glucose and more test strips. As I was having her drink the glucose pack, I double checked it and it was a 46! She was super hard to wake up and was sweaty to the point of soaking the sheets. She starting screaming when I woke her up, alerting my husband to the fact there was a problem (he was sunbathing in the yard). After a mere 45 minutes into a 2 hour stretch of napping, she had dropped almost a hundred points.

     I shudder to think if we hadn’t had the Dexcom and had waited for her to wake up on her own. I will let her sleep 3 hours before I wake her up if she’s not yet up so she would have been up there going lower and lower for another two hours. I would have had a dead-in-the-bed kid. I had to go and lay down for a couple hours after that because I was so sick at the thought. Let’s just say we had already applied to our insurance company for the pump (to better regulate her dosing since the syringes couldn’t get the micro-dosing she needed), and I had them on the phone the next day putting a emergency status on the “review”.  More on that insurance fight next post.

Dexcom CGM Monitor on her stomach

Hell Week

Hell Week

      The first week at home with our newly diagnosed 23 month old daughter was what I like to refer to as “hell week”. I guarantee it would have tried the patience and endurance of any Marine. I cried, I begged, I wondered what the heck my life was turning out to be. And I wasn’t even the one diagnosed with type 1 diabetes!  But seriously, I would have had to check into a mental asylum if it had been much longer than that infuriatingly long week. Why do you ask?  My toddler’s tantrums should have been the basis for the Exorcist. She could have taught fellow two year olds on how to properly throw a temper tantrum worthy of an Oscar nomination. You could have filmed it for a reality TV show on dysfunctional children with behavioral issues.

     I want to preface the following by saying I totally would have done the same thing if I was two years old and had no understanding of what was happening to me. I probably would’ve despised my parents for seemingly torturing me 10+ times a day with needles galore and on top of that, waking me up throughout the night leaving me feeling like a zombie. However, sympathizing does not alleviate the totality of the stress of having to watch your two year old throw herself on the ground and bang her head backwards. Hitting, biting, kicking, & deafening screams. I actually worried that my neighbors would think that we were abusing our child from the sounds that emanated from our house. I worried about concussions from the throwing her head backwards on the tile. She developed bruises from the insulin shots from kicking in the middle of an injection. She ran from us when we tried to get blood for her glucose checks. We woke up every 2-3 hours to check her blood at night to make sure she wasn’t going low. A lack of sleep abounded in our family. Did I mention I was 4.5 months pregnant during this?

     I felt like no one could understand. She was eating more than a teenage boy to recover from the weight loss associated from the DKA episode (at her diagnosis). To everyone else, she was handling it like a champ. But…..She had a special resentment just for mommy during our long hours alone together while daddy was at work. I had to figure out pretzel-like maneuvers to get her into a manageable position to give her shots & check her blood. I had calculators all over the place to double check my carb counts before I could feed her. And did I mention that she wanted to be fed NOW. As in blood curdling screaming that would last from the instant she felt a hunger cue through the blood check, preparation, cooling, counting, plating, etc.  Did I mention she was hungry ALL THE TIME. And on a feeding schedule. With limited carb amounts. Let’s just say she ate a lot of cheese and sugar-free jello that week.

     I was terrified of making a mistake. We had the smallest syringe available and had to fill it to one of the two smallest lines within the syringe. There was: two types of insulin to possibly mix up; lancets to deal with; sharps containers to pick up; organization of the buckets of diabetes care items and education; writing down EVERYTHING.

     Everything I had taken for granted was becoming my most treasured memories. Easter approached right after diagnosis and all the other kids got Easter candies. Except my child, who couldn’t have them. It was like a giant pity-party at our house. Mourning for the childhood she should have had, filled with cotton candy, Halloween treats, birthday cake, candied apples, Sunday morning pancakes, and baking cookies with mom.

 

     Just over a week and the appetite started to settle down. With that, the temper tantrums subsided to the normal two year old levels (while always fun, in no way resembled the terror-striking ones of the past week). My husband and I figure out a sleep schedule. I start to get a handle on my emotions. We crash course learn about insulin dosing, carb counting, symptoms of highs & lows, no-no foods, the glycemic index, food measuring, insurance coverage, outing planning, and where to sell an organ to pay for everything.


     All kidding aside, you literally go through the 7 stages of grief: Shock & Denial – yep; Pain & Guilt – double check; Anger & Bargaining – oh ya; Depression, Reflection & Loneliness – yep; Upward Turn – this is the “getting a handle on my emotions” portion; Reconstruction & Working Through – this one took a couple of months; Acceptance & Hope – 6 months later I am here.)

Organization is Key

 

One of the first things to do when getting started with a new D diagnosis is get organized. I started off with the travel pack they gave us at the Endocrinologist office, but our supplies rapidly started outgrowing it, not to mention how inconvenient some of those pockets are at 2am. So I headed out and picked up a few things and ordered online a TON of stuff. 

The first and BEST thing I could've initially purchased is the clear acrylic organizer by Caboodles. There are a bunch of different ones by that company, as well as I'm sure competitors, but this one just fits our D stuff so well. This one was about $16 at Target in the Beauty/Health section.


In that organizer you will find: 

• Pen needles & 3/10 syringes.
• Glucose meter, strips, and Calorie King nutritional book.
• Alcohol swabs, box of FastClix lancets, box of Precision Xtra blood ketone strips and meter.
• In the individual cubbies are: Lantus (in a green koozie), Humalog Luxura pen; FastClix Lancing device; Sharpie; Humalog bottle koozie; Ketostix; glucose meter control solution. Not exactly lipsticks but what can you do?

The other must haves were: (Shown in Top Picture)

• Sharps container (free pick up/drop off in my county at the local health department/fire stations)
• A by-HOUR daily calendar (b/c the log books they give you just don't leave a lot of room for writing; found on clearance at Target for $5)
• Food scale with tare and g/oz/lb/kg options (EatSmart Precision Pro Digital; $25, Amazon.com)
• The aforementioned insulin koozies which will save you easy money b/c dropping 1 vial of insulin is EXPENSIVE (Securitee Blanket Vial Protectors, $7/each at Amazon.com)
• The aforementioned CalorieKing Calorie, Fat & Carbohydrate Counter is a MUST, MUST for proper D care. I received one free from the Endo but purchased others for babysitter/grandma, grandma #2, main car, etc. ($5, Amazon.com)

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Eventually our daily needs stash was pared down, so I went on to the next find: IKEA 

Ikealand was kind enough to make these kitchen accessories that are sort of perfect for D supplies. The little steel organizer bar allows you to pick the perfect containers to hang, which I selected two flatware caddies and a flat bottom wire basket. Caddy #1 gets alcohol pads; Caddy #2 (usually) holds a fast acting gel, pens/sharpies, Crystal Light liquid and anti-itch cream if we need it after a site change. The wire basket is a catch-all with lancets, blood meter supplies, calculator, insulin, ketone strips, pump clips, etc. It freed up the counter to throw the food scale and logbook underneath it. Nice, neat, organized, and ACCESSIBLE. 

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Other Important Items: 

• 3 tier plastic bin for the extra items like swabs, lancets, blood glucose strips, instruction manuals, extra meters/lancing devices, needles, etc. (I did the snap-by-layer kind but the drawer kind could also work for you; I liked mine b/c the top layer had multiple compartments to organize the smaller stuff, and I didn't have to worry about items getting stuck/jammed in the drawers.). Once we started accumulating things, this went into a kitchen cabinet along with the gobs of pump and CGM supplies. 
• Small Cooler (Ours is the Icy Diamond Small Insulated Tote; $21 at Amazon.com)
• Binder for all the D-paperwork. I used clear plastic sleeves to easily flip through them. It's got everything from the Doctor's info to the free foods (under 5g) that she is allowed, to insurance letters and RX info. I decorated mine with some snazzy scrapbooking paper and glitter letters I had already on hand.

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Vacation worries were solved when I stumbled across the Joy Mangano XL Beauty case. This thing is like the Cadillac of organizers. I did a test run with things still in boxes and ended up with room to spare. The large section had 6+ Dexcom (dexcom.com) sensors alone (hard to see) and I could've added plenty on top. When we took a cross-country trip to L.A., I was able to use this perfectly at the airport because the sections velcro on/off. Non-scannable items in one packet to hand to security, one packet had food/drink for plane ride, and the other 2 were for scannable medical supplies. It folds into around 12"x6"x6" with a handle and since it would be all medical supplies within it, does not count towards your carry-on luggage tally. 

Joy Mangano XL Beauty case

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Preschool?

Found this adorable toddler backpack by Skip Hop, which the teacher would keep. A Vera Bradley ID case on a carbinder is perfect for Dexcom receivers. The middle section has a pencil holder with her Glucagon, jellybeans, fast acting gel, glucose tablets, juice, etc. The front pocket holds her meter kit, pump remote, ketone meter/strips, and her data phone. Side pocket holds a water bottle (even the tall reusable Contigo's). 

So there you have it, a bit of insight into how we started out organizing, and what we do now that we are years into it. Disclaimer: Aside from being a Dexcom Warrior, none of the aforementioned products are affiliated with me/this blog in any way.

Something is WRONG I Tell You!

Mikayla 1 week after diagnosis                                                  

 

A Mother's Intuition.....

    One Monday, my twenty-three month old daughter Mikayla came up to me asking for her baba (sippy cup). Chocolate milk in, drained. Immediately asks for a refill. Give her a little more with a little less chocolate. An hour later, she's bringing the cup back to me for another. Repeat this pattern every hour. Suddenly the cute "baba-mmm" turns into an annoyance. I am a stay-at-home mom, so when my husband gets home, I complain about how much she drank that day and how inconvenient it is to constantly be hounded for a drink. That night she overflows her diaper during her sleep, not common but not unheard of. The last couple of months she has had a diaper rash that comes and goes, but has lately turned into a yeast rash.

    The same pattern emerges the next day. Again, a sopping diaper come Wednesday morning. By Wednesday, she is still drinking all the time and I start to get a bit worried. She is very snuggly/tired. Hence the wonderful world of the web doctor. Biggest topic for bed wetting + yeast rash + drinking a lot + tiredness? Type 1 diabetes, which often presents in toddlers as DKA first. Diabetic ketoacidosis is where the body cannot use the glucose since the insulin is missing, and glucose is what gives your body energy. Your body starts breaking down itself to provide that energy, while glucose levels continually rise since they aren't being burned off. It can lead to coma and death if left untreated. It's rare for a toddler to have Type 1 says the internet. And the beginning of am-I or am-I-not a hypochondriac starts. Another soggy diaper that night.
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    Thursday comes and I call the nurse at the doctors office. The nurse states that the only real way to know anything is to come in, blah blah blah, the usual drill. I call my husband and ultimately decide to go in. Unfortunately, by the time I call back they are booked through the end of the day, so I make an appointment for first thing the next morning.

I want to preface the following with several pertinent facts:

• I am pregnant and have had extremely bad morning sickness, whereas the only thing I had wanted throughout the first trimester for breakfast was chocolate milk. Hence, I started adding some to her milk as well. Soon she is pulling on the fridge doors and pulling out the chocolate Hershey bottle to give to us.
• If I say bottle in this blog, it means sippy cup.
• The night before the doctor appointment, I find out that my husband has been giving her two bottles of chocolate milk before bedtime instead of the normal one regular milk bottle. No wonder she has been soaking the bed!
• Type 1 diabetes history in our family, of which one of my cousins actually died of at the age of 17. So I was already sensitive to the issue.

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    Thursday night, my husband comes home and we start an honest discussion. I have a yeast infection, I give my daughter a shower simultaneously, so perhaps I have given her my yeast infection?  This is also the point I find out about the multiple nighttime bottles my husband had been slipping her. She helps us out by throwing a tantrum that night while being denied the chocolate bottle. We also deny any juice. Suddenly she doesn't seem as thirsty. Coincidence? We think we have a diagnosis. Toddler tantrum/chocolate milk addict.

    Friday morning, we make our case before the doctor, including our original suspicion of diabetes, as well as our probable diagnosis that our daughter was a bit spoiled on the chocolate milk. We are sheepishly laughing that we came to the doctor for something so minor but chalk it up as a first-time-parenting lesson. He says it's probably nothing, but we can do a urine catheter on her to check if we'd like....but....it was up to us. I cringe at the thought of a catheter for my baby. Nope, it can't possibly be something so severe as diabetes when faced with toddlerhood, so we decline and just ask for the yeast rash to be treated. He recommends Lotrimin athletes foot powder of all things, as the Monistat cream hadn't been working.

    Saturday & Sunday, Lotrimin is working like a charm! Woohoo, we eliminated the yeast, and continue denying her any juice or chocolate milk. Normal weekend, if a touch irritable which we attribute to being denied the "good stuff". The child was never a fan of plain water so that was understandable.
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    Then comes Monday (week two).......Cranky, check! Soggy overnight diapers, check! Somewhat decreased appetite, check! Increased thirst again, even with plain milk and water, check! Mild fever, check! Soaking the bed during naptime, check! Fatigue, check!

    Tuesday (week two) is all of Monday with a further decreased appetite and a greater fatigue.

    Wednesday is picking at food plus all of the above, but it seems like the fever is gone after giving acetaminophen. I am doing laundry like a maniac for her PJ's, sheets, mattress cover, regular day-clothes, my clothes from picking her up while she's soaking wet. She doesn't really want to play with anything, just sit and watch TV (which I allow since it's obvious she isn't feeling well). Teething? Flu? Or the start of DKA.....?
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    Thursday I am excited because both my military brother is in town, as well as my aunt & uncle. My daughter sleeps 13 hours until I wake her up to get ready to pick up my brother from the airport. My mother's sister has never met our daughter before, so we are really happy to show her off....except that within 20 minutes of her meeting my aunt, she pukes all over her. Showers for everyone. I mention to my aunt (who happens to be on her local branch board of directors for the Juvenile Diabetes Research Foundation due to the family history/her nephew) that we had taken her in the week before due to suspicion of diabetes.  Mikayla is basically a limp noodle by the nighttime and eats two saltines as her daily food tally. I'm bummed that my aunt didn't get to meet the "real" Mikayla. My kid is starting to scare me. She is normally super bubbly, non-stop. Her just laying there, without even interest in her favorite TV shows, is super concerning. My husband takes her home early and she proceeds to puke a couple more times that night. I really research DKA and even go check on her at 12:30am to see if she has acetone/fruity breath and that she is still breathing. (My cousin died while sleeping). No fruity breath, just smells like good ole vomit.
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    Friday morning after a sleepless night of being freaked-out, as well as one week after initial doctor visit, I am waking her up early to go to the rapid clinic (no appointment needed/walk-in hours) offered by her Pediatrician's office. I meet with their nurse practitioner and a diagnosis of ear infection is determined to be the probable cause. But you know that gut feeling, where you just know there is something more than just an ear infection? That thing keeping you up checking the baby monitor? I sense there just has to be more to it.

1. I point out the fact that we had just been in the past week due to possible diabetes but hadn't run any tests (yes, kicking myself still).
2. I tell her we have a family history of Type 1 and that I might be paranoid, but I am worried about this being DKA. She (thankfully) is agreeable and tells me that we can test her to relieve my mind. She orders an in-house urine catheterization, as well as at-the-lab stat blood-work. Urine comes back within normal limits but ketones are elevated. It could be from dehydration since she hasn't been eating.
3. I breathe a sigh of relief and head to the lab.
4. The rest of the day Mikayla is still limp. I call the doctors office, which still hasn't received the lab report. I call the lab, they close early at the blood draw office and I have no idea how to get in touch with the processing & results department.
5. I figure that we will find out the next day, Saturday, because the doctor's office (thankfully again), offers rapid clinic for several hours in the AM.

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    Saturday morning, our nightmare begins. It started fine, she is even a bit better, giving my husband a high-five, giggling at Mickey Mouse Clubhouse, and eating a bit. THEN I get a call from the doctor's office nurse practitioner, telling me that the lab report is back. DUN-DUN-DUN, she holds no breath before telling me that her blood glucose came back at 428. My heart sinks. She confirms it by telling me that this means diabetes, no doubt about it. She has called the pediatric endocrinologist to meet us at the local children's hospital Emergency Room and that we should probably pack an overnight bag. My first words to her, after OMG, OMG, OMG, were: "I can't believe I was right".  I didn't want to be right, but there I was with a confirmation of my worst fears. I wasn't a hypochondriac or a self-diagnose web addict!

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    I fought for my child, and my intuition paid off. She looked pitiful, but the DKA wasn't at a horrible level yet and we were able to reverse it completely at the hospital within about 30 hours to be discharged home. I went through a period of self-doubt, which lead to the diagnosis being made one week late and a DKA diagnosis being thrown in at that point. You have to trust in yourself to recognize that you know your child best and that you see your child everyday, of which the doctor only sees them a couple times per year for minutes at a time.

    Don't be afraid of testing like I was initially, the urine catheter wasn't that bad actually (although truthfully the blood draw was worse since she was so dehydrated by that second visit). I just had to repeat to myself that these tests will ultimately help my daughter. I was prepared to continue fighting until I got those tests but luckily the nurse practitioner is a diabetic herself and understood my concerns perhaps better than the average medical caregiver. Not every parent will be that lucky. If its the weekend, go to the urgent care center. Not so drastic as the hospital but with the ability to figure it out. Make them listen to you because it's way easier on everyone to figure this out before getting to the point of DKA.

At the Hospital



Sleep Deprivation is the Cruelest Form of Torture...

The last post went into detail about how she was diagnosed, but that was only half of the battle. She had a Friday AM Dr. appointment to do the blood work, which came back on Saturday morning. When the nurse practitioner called with the results, confirming our fear of Type 1 diabetes, she told us to go immediately to the ER department of the local children's hospital, where the pediatric endocrinologist would meet us. Having a specialist meet you at a hospital is scary. Being told to prepare for being admitted is scary. I rushed her to the hospital which is a mind-numbing-30-minutes-by-myself-in-the-car-thinking-about-everything ride. She got checked in within about 15 minutes into triage, where we learned that she had already dropped 2lbs off her 25lb pre-diabetes frame. DKA symptoms state that kids get really hungry, but mine had stopped eating and we were starting to see ribs instead of a round toddler tummy. Under the bright lights of the ER, we were also able to see that she had severely chapped lips even though she had been drinking non-stop. By that point in the late morning, she had also dropped the little bit of energy she had gained upon waking and was back to limp noodle status.

6 hours, two IV's, an EKG, 4 doctors, 3 nurses, a machine that hated us, 1 machine technician, a woozy daddy, and two meals later, we finally had our admission papers and a bed located in the Special Care Unit. Let me tell you that being in a children's hospital is the place to be for your kid. Those people really know how to treat little people with patience, respect, and care. The menus are even tailored towards kids. They moved in a large bed when I told them that the crib was just not going to work because she would want to sleep with me. We were also excited to learn that our favorite nurse was actually leaving the hospital to go work for our new (and very personable) pediatric endocrinologist just a couple weeks later. (Score!) She has a son with juvenile diabetes as well and thus was a huge support to us for the emotional journey we were taking, along with the nursing advice.

The worst part about the hospital was by far the lack of sleep. When dealing with DKA, they take vitals every 2 hours, and blood checks every 1. So for that 1 hour time frame to sleep within, of course our machine that hated us decided to go off every 20 minutes beeping. We would then have to get a nurse in there to reset it. The baby was never sure if the nurse was coming in to do something to her or not, so she would start crying either way. Luckily most of the time they really didn't have to do anything intrusive since one of the IV lines was started simply as a port to draw blood from each time, so it was just a matter of the syringe drawing off the catheter instead of poking her. Note: Next time in a hospital I will be packing a comforter or something to put underneath us on the super uncomfortable beds as well. 

Mikayla took about 18 hours to reverse her bi-carb levels and reduce her ketones to an acceptable low level. These two things are more important than getting her blood sugar just right because those are the things that indicate DKA. Once the DKA is gone, they can move on to managing the underlying cause, which is the juvenile diabetes. By the next morning (Sunday), Mikayla had an appetite to match a teenage boy. We were able to meet with the appropriate dietician and diabetes counselor, who apparently felt that we weren't going to go home and screw up badly with her home care, so by about 8:30pm on Sunday, we were released. Thirty-three hours in which to learn our new life (on no sleep). Not a lot, but honestly, I was almost teary at the thought of sleeping in my own bed that night so I was down for the soonest release possible after getting my kid out of DKA.

I'm sure we met our deductible with that hospital stay, but honestly that hospital and staff deserve every cent. (Arnold Palmer Hospital for Children). I wish I could have brought the nurse home with me for the next week, because I was not prepared for the level of stress that occurred once home. (Next post).