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.
Triumphs, Tantrums, and Type One 