T1D: The Beginners' Guide, or a Letter to P's Co-op Preschool

My dear fellow Ranchonians,

As you all are already aware, P has been diagnosed with Type 1 Diabetes, an auto-immune disorder where her immune system has attacked the cells in her body that produce insulin, rendering her pancreas no more useful than a decorative hood ornament. Here is an excellent and brief overview about T1D if you are curious: http://beyondtype1.org/what-is-t1d/ (hint: she didn’t eat too much sugar)

(This next paragraph may be too much information. Feel free to skip it and go straight to the list below.)

Basically, the insulin that your pancreas produces is the way the glucose (energy) from your food gets out of your blood stream and to your organs for them to use to grow and function. Without the insulin, the glucose/sugar/energy gets stuck in the blood. This means that the body and brain are essentially starving, while the kidneys struggle to deal with the sugar spilling out into the urine, which causes excess urination and leads to dehydration.  Without insulin, blood sugars continue to rise and the body would continue to dehydrate and starve over the long term. On the flip side, too much insulin or unplanned for activity (activity can also lower blood sugar), can drop blood sugar levels to dangerous levels which can lead to seizures and comas (fun stuff, right?). While high blood sugar is dangerous over a long period of time, low blood sugar is acutely dangerous, or dangerous in the moment.

Luckily, through the miracles of modern medicine, I now get to function as her pancreas, providing her with the insulin that she needs in the form of a subcutaneous (or just under the skin) injections 4 times a day. I, unfortunately, sometimes do a pretty crappy job at being a pancreas, so there are some things to look out for when P is at Rancho.

1. Make sure she eats all of her snack. I will portion it out every day when I sign her in. It will be on Cindy’s desk. I will do my best to ensure it is something that she likes, that she will willingly finish, but it is important that she eats all of it before she goes to circle time. Not eating all of it could result in a low blood sugar which could be potentially very dangerous. 
2. Be mindful about sharing food both during and after school. P CAN eat anything. I just, as her ever vigilant pancreas, need to know about it. If she eats something extra, it is no big deal, especially if I know about it. This would result in a higher than normal blood sugar, which is much safer than a low one.
3. Watch for strange behavioral cues. We have noticed that when her sugars are really high, P becomes extremely agitated and upset, lots of screaming and crying. Unfortunately, the only thing that we can do at that point is wait it out. If she is really upset and can’t seem to recover, Cindy will call me and I’ll come and assess if she is having a health care moment or just a regular old three year old moment. When her sugars are low, however, she may be more tired than usual, pale, shaky, unsteady on her feet, or perhaps not able to speak clearly. If you observe P acting strangely and have any concerns, please alert Cindy. She will be the one to make the call to me and to decide if administering the emergency apple juice (located in the fridge in the classroom) is necessary. There is also an EMERGENCY medication called glycogen, which will be kept in the boiler room with the first aid supplies. This is only to be administered by Cindy and only if P is completely unconscious. 
4. Keep your kids home when sick. I know we are all already doing our best on this one, but I just wanted to throw this out there. If P contracts Norovirus, or any other bug that results in vomiting or diarrhea, she will have to be hospitalized and put on an IV. The rule of thumb is to wait a full 24 hours from the last upchuck or under-chuck before returning to school. Do me a solid (pun intended) and help me keep my kid out of the hospital. 
5. Feel free to ask questions. Ask me. Ask P. Ask Jim. Ask Cindy. Encourage your kids to ask questions. Encourage your kids to ask P. She’ll be dealing with this for the rest of her life, so she needs the practice talking about it now. Within the year, she will most likely be wearing a CGM (a device that sits on her arm or belly and constantly monitors her blood sugar, sending me the data wirelessly) and an insulin pump (a separate device that she will wear that will continuously administer insulin via commands from a wirelessly enabled handheld device). If the kids don’t notice the extra snacks and the syringes and the finger pokes, they will certainly notice those devices. They will be curious. Curiosity is beautiful, especially at this age. I believe that the best way through this for P is by educating and advocating, so ask. I will almost certainly give you a longer and more thorough answer than you wanted (kind of like this email), so I apologize in advance. 

You are all beautiful, special people and I am supremely grateful to be parenting along side you. I know this is a lot. Thank you for helping me shoulder the load. 

K

New Normal, Part Three: The Needles aren't the Hard Part

I know what you are thinking, reading these posts. "I don't know how I would do it," or some version of that. I don't know how I could use my three year old as a pin cushion anywhere from six to twelve times a day. I don't know how I would handle the blood and the syringes. I just couldn't do it. 

The reality is you get over that part pretty quickly. I used to be terrified of needles. My step-mother likes to tell a very embarrassing, but no doubt amusing, story about a twelve year old Kate who ran out of the exam room to avoid a routine vaccine. I would warn the phlebotomists that had the misfortune of dealing with me that I was going to sob the whole time, but they should just ignore me and get it done. My first pregnancy took care of that, and any last remnants of needle phobia were banished when P looked up at me at me at the hospital and said, "I want momma to do it," and the nurse handed me the syringe. Honestly, even P is almost over the pokes. She offers up her hand for testing, and picks the leg and wipes the injection site for the insulin, and we are only three weeks past dx. I sneak into her room every night at 9:00pm and inject her Lantus, the slow-acting insulin that mimics the low level of insulin that the pancreas is supposed to be constantly producing (stupid pancreas), right into her belly, without her even waking up. The needles are no big thing. 

The hard part is the constant high-stakes judgement calls. It seems like it should be easy, food in, insulin to match. Here I am, an adult woman functioning as my daughter's pancreas. I should be able to do this. Easy peasy. Except, it isn't. There is a lot of art in the science of diabetes management. Should we give a unit or a unit and half? Should we offer her another tangerine? Did she eat half of that sandwich or two thirds? If she was high at lunch but low before dinner was it because of activity levels or did we weigh something wrong? Should we test her at 3am again or try to let her sleep? 

The hard part is separating out parenting moments from healthcare moments. Normally, in our house, when one of our kids is in the middle of having a big feeling, struggling with the realities of things like the word no, or having to wait, we sit with them and help them through it. We do our best to validate and make space for the feeling and the response while simultaneously reinforcing reasonable limits and, once the big feelings are out of our bodies, trying to use it as a teachable moment, (insert your judgements about my spacey, new-age parenting style here, and then shove it) but in this brave new post dx world, I have to view every uncharacteristic behavior as a potential healthcare moment. You can't effectively parent a kid who has a blood sugar over 300, and a blood sugar under 60 can be potentially life threatening and requires immediate treatment. Short of pricking her finger and testing her, my only indication of how high or low her blood sugar is, is her behavior. I am now in the position, until we grow more confident, of having to threaten my child with a lancet if she can't calm down independently. We misjudged a snack before going to the park a few days ago, and when it was time to leave P had a really hard time (normal), but she grew hysterical (less normal), and eventually was sobbing and screaming and kicking as I forced her into the stroller (way outside of normal). We tested and found that she was at 325 (normal blood sugars should be between 70 and 180 immediately following a meal). There was no reinforcing a reasonable limit. There was no teachable moment. It was a healthcare moment, not a parenting one. I felt the eyes of all of the other parents at the park as I strong armed her into the stroller that she was too big for, while she screamed all the way home. 

The hard part is worrying, constantly, about what her life will look like longterm. There are so many unknowns out there, so many big scary unknowns, even without T1D. When you add a chronic condition, with all of its complications, that requires constant and consistent treatment, the unknowns start to feel suffocating.  It was 1:30am. Everyone was asleep except for me and Q. I had stumbled to the rocking chair with him to nurse. He snuggled in, made a sound that sounded a lot like a mischievous giggle, latched and began to nurse. I was flooded with a sense of well-being, a sense that no matter what other chaos my world held right now, this moment, alone feeding this sweet baby, was perfect. In almost the same breath, I was seized with panic: calories in, calories out, glucose, sugar, insulin. I stood up from my glider, securing Q to my breast with one arm and lunged for my phone. I frantically typed into my search bar, "can t1 diabetics breast feed." They can. My eyes filled with tears. I sunk back into my chair. I felt relief wash over me, for the moment. 

They can breast feed. They can, with a lot of support, get pregnant and have healthy pregnancies. They can travel the world.  They can fail algebra. They can learn french. They can eat ice cream. They can be athletes, doctors, and artists. They can make mistakes and make brave choices and have adventures.

They can even be pop stars. Just like Nick Jonas. 

New Normal, Part Two: The Hospital and Nick Jonas

P: So I have i-ah-beat-ees forever?

K: Yes, you will have it forever.

P: Momma, what forever mean?

And so, we were in the hospital. Two weeks after leaving the maternity ward with a new tiny human (more on that later), we were in peds with a slightly less tiny one. Jim and P checked in at about 9:30pm, and at about 10:45, P received the first of the countless insulin injections of her lifetime.  

I was home with O and Q that first night, and when I heard O start to stir in her bed the next morning, I crawled in with her and we snuggled while I told her where dad and P were and what was going to happen over the next few days. I told her I was scared and it was ok if she was scared too, but that everything was going to be ok. I hope I was more convincing than I felt. Luckily, my dad was able to come up and take care of O, (shout out to grandpa and Libby) so that she was able to keep as much as possible of her routine intact. He also helped take care of me, forcing me to eat something when I came home from the hospital that first night and gathering up all of our laundry and dropping it off for fluff and fold so that everyone would at least have clean underwear. (shout out for clean underwear) 

Considering that we were there to receive a life-changing diagnosis about a chronic condition for our preschooler, the hospital was pretty uneventful. The doctors were wonderful. The nurses were amazing. Everybody, diabetic educators, nutritionists, child-life specialists, who we encountered met us with compassion and respect. When my eyes would well up, some of them even cried with me. All of them told me that Nick Jonas has Type 1 Diabetes. No joke. All of them. Even the janitor. 

They also told us how early we caught P's diabetes. They told us that most kids come in dehydrated and in ketosis, and end up needing time in the ICU with an IV. P was basically fine. Her sugars were through the roof and she didn't feel great, but after that first shot of insulin, she was ready to come home. The next two days in the hospital were really for Jim and me. We had to undergo a crash course in pediatric diabetic care, learning how to measure and administer syringes of insulin, how to accurately count carbs, and monitor for signs of hypoglycemia, all while nursing a two week old in the corner of her hospital room and furiously googling things like pumps, A1C, sick day protocol and CGMs on our iPhones.

And then, home.

With 8 bottles of insulin. With 10 boxes of syringes. With our sweet, tiny P, who had to miss her first ballet recital because her stupid immune system decided to attack her dumb pancreas. (more on dumb pancreases later)

I'm constantly a confusing combination of grateful and angry. I am so grateful that we have the resources and the technology to take care of this, to be the pancreas P deserves, and in the exact same moment, I am so angry that she has to live like this, or some version of this, for the rest of her life, our new normal.

I'm trying to breathe through the anger. I'm trying to hold on to the grateful. Somedays are better than others. 

Still not sure how today ends. 

New Normal, Part One: We Knew

We knew. On some level, we knew months ago that something was wrong. Jim and I had even talked specifically about it, one night on the couch, after she had wet her bed, again.  I believe my exact words were, "Shit, man. That would suck," but it couldn't be that. 

I was 37 weeks pregnant, and she couldn't have it. I was being a hypersensitive mom. I wasn't sure what the exact odds were, but they were small, so it wasn't that. It was no big deal. She was drinking more water, but so what. We all were. It was hot, the hottest October and November on record. She was wetting the bed, but she's three. Three year olds wet the bed occasionally, even ones who have been out of diapers for over a year. She had lost a little bit of weight, maybe. I couldn't be sure. I don't regularly weigh my three year old. She was melting down at the smallest thing, dissolving into hysterics, but again, she's three, with a new sibling on the way. I could explain it all away, but I knew. 

Two days before dx. 

The day we came home from the hospital with Q (more on that here) I called and made a doctor's appointment, nothing urgent, just a standard check-up. She was months overdue for her 3 year old visit any way. I would ask the pediatrician to do a urine analysis. P would pee in a cup. We'd all have a good laugh about that. Our kindly pediatrician would smile at my overabundance of caution. I would be wrong and I would feel better. I was so ready to be wrong. 

We ended up having Q's two week visit and P's check up on the same day. I took Q in the morning and Jim was going to run P back in the afternoon, while I did after school pick up for O. It would be fine that I wasn't there, because nothing was wrong. Repeat after me: nothing is wrong, nothing is wrong, nothing is wrong. She was a happy, active three year old, who was adjusting to a new baby in the house. Jim called from the appointment and told me the pediatrician had told him the urine analysis looked odd, but they often get strange results from the in-office test. He would send it to the lab and call us later with the results. She looked fine to him. He sent Jim home with a packet of info on bedwetting and another one on how to help kids adjust to a new baby. I didn't feel better. 

That evening, after everyone was fast asleep, we sat on the couch waiting. I couldn't tell you what we were waiting for, but we both felt heavy and expectant. Jim decided to try to log on to P's online medical record to see if the lab results were in.  When we saw that her ketones were over 80, we knew. We knew we'd be going to the hospital soon. We knew we were in for a lifetime of blood tests, needles, and endocrinologists. We knew this was T1D. We knew because, over the past month, we had both been separately researching and reading about what happens after a T1D diagnosis, because somewhere inside of us, we both already knew. I looked up at Jim and said, "I can't go. They are going to need to keep her for a few days, and I can't go." He just held me, the same way I knew he would hold her. 

Within twenty minutes of Jim finding the lab results online, P's pediatrician called. Within the hour, Jim and P were on the way to the hospital. They had a room ready for her and the charge nurse knew we were coming, no emergency room, no wait. (Shout out to Kaiser) Watching Jim pull out of the driveway to take one of my babies to the hospital was one of the worst moments of my life, but I was only two weeks postpartum and Q wasn't allowed at the hospital over night. After they left, I ugly cried and cleaned. 

In the following weeks there has been a fair amount of ugly crying, it sneaks up on me sometimes, and significantly less cleaning. We are on a pretty steep learning curve, but we are figuring it out, one poke, one reading, one syringe of insulin at at time. Jim and I are a great team, and I feel supremely lucky that we are doing this together. Somehow, in the middle of all of this, Q is a month old, Christmas happened, and we've laughed together more than we've cried. The rules about who sleeps in what bed are just about out the window, but who needs rules about silly things like that. Right about now, I need all the snuggling I can get. 

Two weeks after dx.

Still, not sure how today ends, but sure that we all end up together.