It’s Not All Rainbows and Unicorns

I brag about the unicorns and talk about the rainbows because people don’t want to hear about the rest.

March has been our month, lots of magical 100s popping up on our blood sugar checks. First month out of honeymoon, I’ll take it. I consider this awesome because our kiddo doesn’t have a continuous glucose monitor (cgm) that tells what her blood sugar levels are every 5 minutes. We still do the old school, poke her finger and check, up to 10 times a day, to see where her levels are. I guess this does give us more of an opportunity for that magical number to appear on the blood glucose meter. Despite this month’s pictures and triumphs — it’s not all rainbows and unicorns.  Shocking, I know…

I brag about the unicorns and talk about the rainbows because people don’t want to hear about the rest.

No one wants to hear about feeding our daughter smarties at midnight for a low of 67.  Two rolls to get her blood glucose above 80, this is followed by one half cup of whole milk to keep her stable through the rest of the night. Knowing that Fairlife milk has just the right mix of fat and protein without a ton of carbs.  Setting an alarm, which is really just a formality, we don’t fall back asleep because if her level drops too low again she could have a seizure or simply never wake up, to recheck in two hours.  When her blood glucose is over 150 at this point, then we can settle into a semi-restful sleep.  

No one wants to hear about the midnight checks when her blood glucose level is over 350 for no apparent reason.  We program in a correction dose of insulin and deliver it to a sleeping child. Set an alarm, once again this is just a formality, as no one is going back to sleep, for one hour later. We recheck to make sure that her levels are coming down, we need to rule out the possibility of a bad pump site, yet make sure that her blood glucose isn’t dropping too rapidly.  We need to make sure she isn’t heading into the realm of diabetic ketoacidosis (DKA). Then the alarm is set again, this time as long as the number is good, we will fall back asleep, only to wake up in 2 hours to make sure that she’s stable at the 3ish hour mark after receiving the correction.  

Oh and don’t worry, she’ll be waking up at her usual time, around 0730am, because she doesn’t arouse for finger pokes any longer.  She has even learned to eat smarties in her sleep and won’t remember it in the morning.  We wear the headlamp and fumble around with the glucose meter, poker, test strips, and a cotton ball. We are the ones who appear tired during the day, have dark undereye circles that don’t ever disappear, and secretly long for a child who takes naps.  I’m lucky that I have a great husband who shares the duties and is willing to trade-off nights so we both can get some sleep and have some semblance of normal.

Sprinkle in the fact that Frankie is a typical three year old.  She is testing her boundaries. Her current specialty is drawing out bedtime to over an hour, more books, potty time and water breaks.  She is throwing the occasional temper tantrum, often because we won’t let her do something pretty dangerous, or simply because I don’t want to push the fucking car cart at King Soopers. Oh and to top it off she is feisty as hell — I wonder where she gets that.  

This is just a sneak peek into our lives. It’s the hand we’ve been dealt and we are trying to play it well.  Doing this all while maintaining our friendships, sense of humor, and our relationship.  We’re also trying to raise a well-adjusted tiny human who looks at the world around her with amazement and curiosity.  All of this means my coffee habit has exploded from something I simply enjoyed at a higher than normal level to something I need at a higher than normal level in order to simply exist in my life. And I drink it black, because who needs sugar when your life is engulfed in rainbows and unicorns.

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Our Daughter on Steroids

This is our daughter. This is our daughter on steroids. Any questions?

 

Monday my little one woke up with a unicorn. A perfect blood sugar of 100, that we actually happened to catch on the meter. My philosophy “this is a great omen for the rest of the day”. Boy was I wrong. Around 3pm, she curled up on the couch and took a nap — this is very out of character, but she had a big weekend, I thought maybe it had finally caught up with her. Around 4pm she woke herself up struggling to breathe with a barking cough. I picked her up and she was burning up, checked her temp, fever of 103.7F. I called the pediatrician and gave liquid ibuprofen (which I forgot to dose for in all the frenzy that followed). I knew in my gut I needed to take her in, but I needed the nurse on the pediatrician’s call line to tell me.  There was no mistaking that barking cough and stridor, our kiddo had croup.

We have been lucky enough that we have avoided respiratory viruses and most viruses in general throughout her 3 years.  The occasional cold and/or runny nose, but nothing serious. Of course the pediatrician’s office was closing, so we had to head to the ER.  At the ER she got a dose of liquid acetaminophen and a dose of oral liquid steroids. Her stridor had gone away, so no need for a breathing treatment. The ER physician called the endocrinologist on call, who spoke on the phone with me about the plan of attack for dealing with the steroid induced high sugars that were sure to ensue. We felt confident going home and ready to tackle the next 72 hours.

The next day, I went to work and my husband stayed home and battled sugars, increasing basal rate every 2 hours and giving lots of corrections.  Our kiddo was cranky most of the day, as you would be if your sugars were running double what they normally do. Steroid induced high sugars are stubborn. He ended up running the pump at a +100% temporary basal. This got her glucose levels below 200 and she started feeling good, running in circles around the house and singing at the top of her lungs — oh, this is our kid hopped up on ‘roids.  The stubborn highs and increased insulin needs lasted about 12 more hours and then her sugars started coming into her range without the temporary basal on the pump.  This is our daughter. This is our daughter on steroids. Any questions?  It made us realize steroids and illnesses are temporary and we can tackle them head on. You need to and are able to throw large amounts of insulin at high sugars. I relayed our story to a physician I work with, who also has a daughter with Type One, and his comment was “It really makes you have a whole new level of respect for the pancreas.”

Which made me realize another thing we fail at miserably as healthcare providers when it comes to treating Type One diabetes. We are always seeing doses and making assumptions. We only want to look at the numbers, the numbers of basal, numbers of corrections, insulin to carb ratios. We are judging the patient who has larger insulin needs, they are getting labeled non-compliant or brittle if their needs suddenly increase drastically while hospitalized or ill. Larger insulin needs just means your body needs more insulin than the patient down the hall.  Reality is no one knows the exact average number of units of insulin any given persons pancreas excretes at any given time to deal with all life throws at it.  The number of units only reflects the patient’s magic number, the number he/she needs to keep their glucose levels in range. The number is completely arbitrary. After honeymoon my daughter’s insulin needs doubled, they increased to 8-9 units a day, during illness she received 17 units. At first, I freaked out, she’s so little, that’s so much insulin. Then I realized, oh well, it’s the exact amount she fucking needed.

Then, I made a mental note, I’m never going to comment on any patient’s insulin dosages.  Unless it is to question why the dose is changing drastically while in the hospital (that is the number one thing providers like to do when diabetics get admitted — they like to change their doses).  Patients are on the exact dose that they need.  I’m going to be a more empathetic nurse, dealing with this disease on a daily, hell hourly basis is really hard.  It takes a serious mental and emotional toll, I can only imagine the physical toll the person with the disease also endures. Who are we as healthcare providers to make anyone feel guilty or judged for doing exactly what their body needs?  My number one take away this week, it doesn’t matter what dose of insulin they need to keep glucose in their range.  All Type Ones have a useless pancreas. An organ no one thinks about until it doesn’t work.  My daughter has a broken pancreas, she doesn’t make insulin, she wears her pancreas in a fanny pack around her waist.  Her pancreas just happens to be pink and makes her smile.

 

Oh, and that magic unicorn that she had at the beginning of the illness, she had another one this week. On the day all of the steroids wore off, this time right before dinner. Unicorns aren’t good omens, they’re mythical and magic and make us all feel good inside. That’s why we brag and post and cheer each other on when we find them.  

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The Honeymoon is Over

It’s an odd feeling, for months it was all we could talk about in our house. Questioning how long it was going to last…

 

 

Well, it’s official, the honeymoon* is over. There is a part of me that is letting out a big sigh. I’m not sure if it is a sigh of relief that we can start battling diabetes without the bum pancreas excreting random insulin or if it is more a sigh of reality finally setting in, again and with a vengeance, our 3 year old’s pancreas is legit broken. I mean we knew it was, but now it’s more obvious, numbers higher than we have seen since she was first diagnosed.

It’s an odd feeling, for months it was all we could talk about in our house. Questioning how long it was going to last, thinking it was ending only to face lows after making basal adjustments. We talked about wanting it to end, so we could start to make the needed adjustments and settle into a bit of an insulin routine. We wanted it to end so we could feel more comfortable teaching others how to care for her when she is away from us.  Hoping that  some semblance of normalcy would indeed happen. Like when all her beta cells ceased to exist this magic switch would be flipped and diabetes would be easy to control. Ha! Like somehow after the honeymoon ended the diabetes gods would decide we have learned enough, we have grown, we have passed some imaginary test and poof — great control with little effort. Ha!

Honestly, we knew that that wasn’t going to be reality. But hey, a girl can still dream, right? We know that this disease is all about testing. Testing blood, testing the right insulin dosages, testing the right foods, testing the right correction factors, testing the right amount of time to wait between dosing and eating. It is also all about testing us. Testing our patience (mine runs very thin and my husband is a saint), testing our coping skills (those need some work), testing our support system (we should reach out more frequently, but that means we have to admit we need help) and testing how little sleep we actually need (that answer, more than we are currently fucking getting — we aren’t 20 any longer).  All this testing sucks, it sucks for her and for us.

Diabetes also likes to keep us on our toes. When we think she’s going to go low, she goes high and vice versa. Just when we think we have ratios and corrections figured out she becomes more carb sensitive and less insulin sensitive.  Just when we think she isn’t going to eat the entire meal, she asks for seconds (but I’m not going to complain about an increased appetite and the growth spurts that go along with that. Although they do wreak havoc on blood glucose levels).  The constant inconsistencies are what make this the hardest. I’m hoping that we will see some improvement in these with the end of the honeymoon. Our biggest triumph this week was that she played at lil monkey bizness for 5 hours without going low. She was running, jumping, climbing and giggling. She looked like every other kid out there and stayed in range the entire time. It was really great to not have to force feed her smarties and to be able to chat with my friend while the girls ran around.

Someday this is going to be easier — at least that’s what more seasoned parents have told us. The ones who have been here before. I really hope they are right. Strangers have no reason to lie to us; they’ve been in our shoes and know how hard the beginning is. Maybe they just don’t want to be brutally honest, maybe they don’t want to discourage us knowing how young our kiddo is and how long this journey will be. I’m going to be optimistic and believe them when they say it’s going to get easier — it has to, for her, for us, for my sanity.

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Rocking the tutu and fanny pack while flying down the slide. No lows. Wooohooo!!!

*Honeymoon is the period of time between enough of the beta cells being killed off that diagnosis occurred and the destruction of the rest of the beta cells.  Because the pancreas is getting outside help from insulin injections the remaining beta cells start to produce more insulin. This causes insulin needs to greatly decrease. Honeymoon phases tend to be shorter the younger a person is diagnosed and varies immensely from person to person.

 

 

 

Letting Down Our Guard

Just when we start to let down our guard…BAM! Diabetes hits like a ton of bricks.

The past few weeks have been pretty uneventful. I feel like we have truly embraced our normal and taking care of our sweet child has just become routine. It’s almost as if the fates know these thoughts start going through my head “Take that diabetes” “We’ve got this” “We’re sleeping through the night” “She’s just like the rest of the kids on the playground” and BAM! Diabetes hits like a ton of bricks.

Just when we start to let down our guard a bit, we are smacked with reality. This past weekend Frankie and I decided to take the light rail to a swim meet to watch the kids swim, play with swim buddies and just enjoy the beautiful weather.  Before we left I was on the phone with my mom who said “You really want to take the light rail and not have a car if you need to leave?”  I knew what her undertones were “Do you really not want to have a car in case there is a diabetes related emergency?” I brushed off her comment, the funny thing is she gets that from me lately. I’m always the one who always wants to have an exit strategy. Always thinking about the what-ifs and highly unlikely scenarios. But come on, we aren’t going to skip the light rail, Frankie’s favorite form of transportation because it leaves us car-less.  Hello, there is always Uberfamily.  

Well, we’d been at our destination approximately 40 minutes when a bit of a panic came over me. She was running around with one of her favorite swim meet buddies, the 3-year-old son of fellow swim coaches. They hadn’t been running more than 20 minutes, when Frankie tripped and fell twice. Her first time tripping was when her foot hit a large divot in the grass — ok reason. The second time, I looked and there was no explanation. Mama instincts told me to check a blood sugar. 46?!? You’ve got to be freaking kidding me! I had checked right before we left the house (approx 75 minutes prior) and she was 188, which was perfect since I knew there would be lots of running around. Her sugar hadn’t been below 50 until this point, we have been pretty regimented about checking her when she plays and making sure she is eating lots of snacks.  Ok, my kid is completely hypo-unaware, as are all 3 year olds. I embraced my new outlook of not freaking the fuck out, took a deep breath and treated the low. We sat in the grass, had a picnic of smarties, honey roasted peanuts, and did a temp basal decrease of 60%. The good news is she stayed in range the rest of the day. With the continuing running and playing and several uncovered carbs. Outside of a few quick blood sugar checks she looked like every other little one at the swim meet. 

And you know what, life went on. It goes on every day.  Fate just likes to remind us that we always need to keep our guard up just a bit.

 

100 Days Down

100 days feels like a huge milestone, but the reality is it’s just 100 days into a lifelong disease.

This past week we had our 3 month endocrinology visit.  As I’m sitting in bed, cuddling with my little munchkin, writing this blog, I’m having 2 very conflicting thoughts. 1) Has it really been 3 months already? 2) It’s seriously only been 3 months?!? I think this dichotomy of time exists in most experiences throughout life.  

I truly feel like the last few months have been a bit of a blur. So many changes have taken place in our lives. October 1st, my husband moved into the head coach position for the swim club for which he was working. One week later, I accepted a new position as a pre-op RN at a different hospital — I was ready for a change of specialty and needed different hours. Hours so we didn’t have to leave our almost 3 year old home alone at 5:30am, I hear that tends to be frowned upon. Two weeks later, Frankie was diagnosed with type 1 diabetes. Damn, October was eventful. Luckily, my last day at my job was 3 days after Frankie was diagnosed.  My new job was understanding and accommodating and allowed me to push back my start date. This granted me the opportunity to stay at home for 5 weeks and settle into our “new normal” — whatever the hell normal looks like. I’ll be forever grateful for the way timing worked out for each member of my little family.

Honestly, I can’t remember much between Halloween and Christmas. (Game 7 being the exception) Days were spent obsessing over numbers, counting carbs, checking blood sugars and looking at dosage charts. Nights were spent setting alarms, checking sugars, and then lying in bed for the next hour or so worrying about how her sugar would be in the morning and doing mental math (because obviously 3am is the best time for that). Those middle of the night (or early morning, depending on the day) hours were often filled with tears. Hours were spent worrying and tears were shed over events that are years off. “How will this affect her swimming?” “What about when she moves away and goes to college?” “I hope she has boyfriends (or girlfriends).” “I really hope she has great control before she considers getting pregnant. What if she never wants to be pregnant because of this?” “I hope she doesn’t grow up to resent us.” OK, Beth, slow your roll. Frankie is only 3 years old. There will be plenty of tears, fights, and opportunities to yell at diabetes throughout the years.  These are the moments that I feel “It’s really only been 3 freaking months?!?” And luckily, since some time around the 6 week mark, these nights have become few and far between, the tears aren’t as easily triggered and don’t flow as freely. 

Frankie was a perfect kid before Halloween and now she is a perfect kid who happens to have type 1 diabetes. She inherited her father’s easy going attitude, which has served her very well the past few months. They say kids are so adaptable — it’s totally true. This diagnosis rocked our world completely, but you would never know that it shook hers. Frankie never cried over shots, handles pump site changes like a champ, can do her own finger pricks without flinching, and knows she has to ask us if she wants to eat something. (So that we can count the carbs and dose her, she’s not on any food restriction). Most of our friends and family have been nothing but supportive. Not even blinking an eye when we have to check a blood sugar during a playdate, or whip out the blood glucose meter at the table at a restaurant. No sideeye from waitstaff when we ask for amazing pancakes (thank you Snooze) — hold the syrup and powdered sugar.

Luckily our friends know us well enough to not offer “cures” or tell me “there is an oil for that.” They know those comments would be met with eyerolls and science. We have received a few “That’s a lot of stuff to haul around for one little girl” “Are the doctors sure about the diagnosis?” “Are you positive she’ll have this forever?” Yeah, yeah, it is a lot of stuff (we take our backpack with supplies, and lots of food, everywhere we go), but it’s all necessary.  Yep, for sure type 1 diabetes, they don’t give a 2 year old a lifelong diagnosis without being positive. Yep, she will have it for-fucking-ever, until there is a cure. These are the opportunities that I try to educate and hope that the people making these comments are willing to listen. These are also the comments that I personally have to not let get under my skin. I have to take a deep breath, find my inner ohm, and realize that some people won’t ever fully comprehend what we are going through on a day-to-day basis.

It’s probably a compliment that some people don’t understand. It means we’ve seamlessly transitioned to our new normal. We’ve adjusted so well that most people we meet, even other type 1 parents, are surprised that we’ve only been going down this road for 3 months. These are the moments that make me feel like “Wow, it’s really only been 3 months?” and I beam with pride on the inside. Then I look on the dining room table, the bathroom counter, the bedroom floor, random corners of our home, and see that our normal includes test strips everywhere (those little suckers seem to magically multiply). Just one more reminder that we are surrounded. 

I also feel like I have aged 3 (or maybe 30) years in the past 3 months. 100 days of not sleeping will do that to a girl.  I’ve matured, yet at the same time I have become a bit more selfish than I was before. That said, I acknowledge that I have put a barrier between my little family and the outside. The mama bear in me has been awoken. 

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When I see this hanging in the laundry room, in reminded I’m not alone. We are in this together, being the best damn pancreas we can. 100 days down.  We’ve got this!

Foot note:

If you know me personally and feel like I talk too much or post too often about diabetes, that’s on you. I’m offering no apologies for frequently talking about something that impacts my family on a daily, hell, on an hourly, basis. I have this overwhelming desire to educate people about type 1, how it affects my family, and all of the myths that surround the disease (even, and especially, in the healthcare realm). I’m pretty sure it is now my duty in life to spread awareness.

Paging Nurse Dramatic

I’m great in emergencies…at work.

I’m going to start by saying, I’m great in emergencies. Working high risk labor and delivery most of my career has taught me to keep a cool head, scan the room, anticipate needs, and act quickly and accordingly. Even when all of the commotion makes the room seem chaotic, medical professionals know things are under control, especially when you have a great team. Many of my co-workers would probably agree with the sentiment that I’m great in emergencies…at work.

Why can’t a cool, calm head be something that translates to “home me” as well? I’m an utter shit-show in emergencies when they involve people I care about (Ugh, that sentence is brutal on my soul to even type). You can ask my best friend about the time her toddler was bitten by a dog and I completely froze, ask my carpool buddy about the time she choked on a pill and I stood in the corner with nervous laughter, which she could hear the entire time…ummm, on second thought, please don’t.  There is something about things happening to the people I love that just sends all my calm and training out of the window. This is especially a bad thing because people tend to look to me to jump to action because “You are a nurse”. But it is a good thing to know my limitations, and I know others can be more helpful during emergency situations.

Honestly, I think this goes along with my glass is half empty attitude.  When things start to go south, I think of the worst case scenario. This was challenged at home a few weekends ago. Frankie had a random stomach bug. (Crap, where did we put that sick day protocol?) She puked while we were fighting a stubborn low — couldn’t get her up above 70 (her endocrinologist wants her between 100-180 as a reference point). We were at the library, of course random puking couldn’t happen at home. As soon as we got home, I checked ketones 4.2 — shit, over 1 and we’re supposed to call the doctor and give extra insulin.  “How the hell am I supposed to give insulin when I can’t get her sugar above 100?” “Oh my god, we’re going to have to go to the hospital?” “Mom, you go pack a bag while I call the BDC.” Yep, all three of these sentences came out of my mouth while I was dialing the phone to talk to our endo. (I realize now, it may have been slightly dramatic)

I was pacing as I was awaiting the call back from the doctor on call, I called Jason to let him know what was going on (because obviously the one person who keeps me calm was at a swim meet out of town), and I was throwing some clothes in a bag for myself (you know, since I was sure we were going to the hospital). The endocrinologist called back and was totally nice, told me to decrease basal rate on the pump (duh, less insulin will allow her sugars to go up), reassured me that the ketones were starvation ketones (yep, hard to have DKA when your sugar isn’t above 100), and encouraged sugary fluids so we could hopefully flush out the ketones and attempt to get her sugar high enough to give insulin. I took a deep breath and decided to tackle the task at hand, and remembered all of my freaking nursing education and how the human body works.  The rest of the night went off without a hitch (except that my atypical 3 year old doesn’t like to drink anything sweet, so much for treating lows with juice), sugars came up above 100, ketones came down with lots of fluids, and she only puked 1 more time in the middle of the night. Frankie survived her first sick day with type one. Although, I was running around like a chicken with my head cut off.  What the hell am I going to do if an actual emergency arises??

That said, I’m going to work on changing my home emergency response, my fight or flight is going to get its shit together. I need to, for my family and for myself. I need to remember to take a deep breath, take a good look around, assess the situation and act accordingly. If I can’t, I’m never going to survive this stressful, beautiful life we’ve been given.

D-Day

The official Diaversary (Diagnosis Day)

Our personal D-Day. October 31,2016. Halloween. The day our little one was diagnosed with type one diabetes.

My husband called me at work with the number I didn’t want to hear. He had taken our almost 3 year old daughter to the pediatrician to get checked for diabetes. I’m a nurse and the insatiable thirst, excessive urination, and increasing appetite had set off red flags for me that I could only ignore for so long. He called and only said “It’s over 500.” I instantly started crying, full tears right there at the nurse’s station.  My co-workers, couldn’t have been more supportive, hugs and boxes of kleenex came flying my way. Since our daughter, Frankie, was acting ok and not having any change in her level of consciousness the pediatrician let us drive ourselves to the hospital. I met Jason at home to get our stuff together. On the way home I called my mom to see if she could come down from the mountains and stay with our dogs since we had no idea when we’d be back.

An hour later, we were on our way to Children’s Hospital of Colorado ER with our bags packed. Here they checked Frankie for DKA — luckily she wasn’t in it; however, her blood sugar was now over 600.  The beauty of being a nurse, my daughter isn’t scared of hospitals at all. And luckily my daughter used to visit me at work regularly when I worked at Children’s. It was also good, to keep me distracted, to have the support of  two of my former co-workers and friends to come hang with us while we were waiting for a room upstairs. Our little munchkin was a trooper, not even a single tear with the IV start, blood draws, etc.. It helped that the child life specialist was amazing and since it was Halloween all of the nurses and techs were dressed up. Frankie’s main ER nurse was a kick ass ninja turtle. We finally got to our room on the 8th floor around 10:30pm and then we were discharged before 7:30am, so we could head to the Barbara Davis Center (BDC) for a full day of diabetes education. Damn, that night was a whirlwind. It was full of tears, both of sadness and anger.

I am so thankful for the BDC. If it was our lot in life to get this diagnosis, then it was fate that we were in Denver at the time.  BDC is one of the top juvenile diabetes centers in the United States and it’s easy to see why. From that very first, information filled day, we’ve been supported immensely.  November 1st we were assigned an entire team of medical professionals.  A social worker, a registered dietitian, a registered nurse, a nurse practitioner, and a pediatric endocrinologist. Sounds like I just introduced The Breakfast Club. There were confessions and  lunch, but no dancing montage. (“Don’t you, forget about me…” Insert air fist here)

Everyone did a great job explaining everything to my husband and me. Giving us plenty of time to ask questions, practice blood sugar checks and injections, and just giving us reassurance.  Near the end of the day, I realized we had been paired with the correct endocrinologist for us. We were talking baseball and great World Series games. He apologized to my husband for speaking so much to the RN in the room as he was writing down websites and we were talking research. I looked at  him and said “Since I apparently can’t treat this with essential oils, can I at least get some vegan insulin?” He looked at me, smirked and laughed. At that moment I knew he was the right endocrinologist for us, and that this was going to be okay.

And that is the day, ironically a day that revolves around strangers giving candy to children, that we found out that our daughter was just too freaking sweet (literally).

And of note: Our beloved Cubbies would go on to win the World Series in the best ever game 7, 1 day later on November 2.