Diagnosis

This is the story of Josie's Type 1 Diabetes diagnosis.

Christmas Day 2018

The days leading up to Christmas were busy, as always. Getting plans set with the different family members, getting last minute gifts, cleaning the house, planning the various meals and outfits, etc.; there was plenty to do. I was excited for this year's Christmas celebrations because it was our first Christmas in our new beautiful house, and I loved how all my Christmas decorations looked in it. Despite living in a brand new home that we both loved, I was experiencing terrible anxiety throughout the summer and fall. But, I felt like that was starting to lift as we went into the holiday season, so I was thankful and hopeful. The kids were happy and excited for Christmas, too, and couldn't wait for Christmas Day.

Mike and I remember wrapping gifts late into the night as Christmas got closer, and noticing Josie getting up to go to the bathroom a few times. It didn't ring any alarm bells, but there was one time, I believe it might have even been the day before Christmas Eve, when I saw her getting up for the 3rd time, and I did have the thought, "Oh, that's odd. I feel like she is peeing a lot at night..." but I didn't say anything to Mike or think too much about it.

Christmas Day came and we had a good time with all the various family members. Looking back at the photos, my head kind of spins thinking about all that we did (and we usually do) for the holidays. Between my family (split into 3 different groups since I am close with a lot of them) and Mike's family, and church, we are not the kind of family that just relaxes at home for the holidays! But, it's important to us so we do it. In searching for signs of what was to come, I don't see Josie acting or looking that unusual. She doesn't look pale or sick to me. I can't tell from the pictures if she looks like she was losing weight, but I do remember when we were in the hospital thinking Josie did look rather thin. Josie was cheerful and bubbly, as she always is, on Christmas 2018. We didn't notice any odd behaviour during all the gatherings, like frequent trips to the bathroom or excessive drinking, but that was probably because we were so busy with everything going on, and Josie is 8 years old, so it's not like we supervise her bathroom usage. Auntie Katie looks back and recalls Josie asking for water several times, but I don't think she thought much of it either until later, because it's not like it was every hour or anything like that.

Then on the 26th, Mike and I felt were too exhausted to make dinner, so we decided to go to Red Robin. We got there a little on the late side (I think around 7pm) and sat down to eat. I remember being mildly surprised that Josie kept saying she was so hungry! Normally, Josie is a good eater, but not our most voracious eater. (Michael Anton gets that title.) She ate her kid's meal of a plain hamburger, french fries, and mandarin oranges. Then, she asked if she could get another hamburger. I remember looking at her from across the table and being startled. I can't remember if we ordered her another, but she definitely complained after dinner that she was still hungry. At this point, we did start to notice the bathroom trips. At dinner I think she got up 4 times. It was obviously getting excessive, but we still didn't immediately think something was wrong.

After dinner, we went over to Wal-Mart for a few things we needed. It was getting late, but we decided to quickly run in anyway. Of course, as soon as we got there Josie said she had to go to the bathroom. I definitely started hearing alarm bells in my head at that point. As we were walking through the store, maybe 10 minutes later, she had to go again. My heart started racing again, and Mike and I were discussing the fact that this wasn't looking good. I told Lou and Josie that if she had to go again one more time while we were in the store, that we were probably going to have to call a doctor. Sure enough, about 10 minutes after she peed, she told me she had to go again. Shoot. I felt a lump in my throat.

Mike and I were talking about it on the drive home and we definitely knew what these signs could potentially point to. We have good friends at church who have a son with Type 1 Diabetes, and I had in fact gone to visit him at the hospital when he was diagnosed. At the time, he was only 3 years old, and I remember strolling through the hospital with Josie in the stroller and Lou toddling along beside me. I remember feeling so bad for their family, and wondering how on earth they were going to manage such a great burden. But thanks to Mary's posts about diabetes throughout the years, the warning signs that stuck with me were frequent urination and extreme thirst. At the time though, I don't think I processed that abnormal hunger was also a sign, but it makes sense. (Also weight loss, fruity breath, and disorientation, which were not as apparent with Josie.)

When we got home, Mike called the nurses' hotline through his insurance while I put the kids to bed. The nurse asked if we had access to any kind of glucose monitor. Mike told her that his dad had one and we could go over and check her blood sugar with it. So at around 9:30pm, Mike set out with Josie to his parent's house, while I laid in bed with little Penny, trying to breathe.

While I was waiting for Mike's phone call to tell me the results of the finger prick, I already knew she had diabetes. I just knew it. In my mind, there was no other explanation for her bathroom trips and hunger. I felt a sense of doom and sadness. I felt overwhelmed. I thought about our kind, loving, hilarious Josie and couldn't fathom that her body was potentially sick, very sick. It was a long hour or so waiting with my thoughts.

Meanwhile at nana and papa's house, Josie arrived and they tried to give her the blood sugar test. At first, papa looked at the reading and I believe it said something above 600. He really couldn't believe that, since he had never seen a number even close to being that high. So he quickly tested it again: "ERROR." Then, the third time they tested, it again said above 600.nMike called me and told me the news. We knew.

At this point, I'm not sure why we didn't go straight to Children's Hospital. Instead, after nana arrived to watch the sleeping kids, we went to our local hospital to the ER. I remember the ER doctor was so young! (I guess you start to notice that as you get older.) and he came in and looked at Josie and said, "Yeah so, Diabetes; it's watcha got" with a sympathetic shrug. I remember thinking it was so weird how he came to that conclusion after literally just doing a blood check. I asked "Are you sure? Is there a genetic test or something you will have to do?" He replied that no, they could tell based on how high her blood sugar was, and that there wasn't really anything else that would cause such elevated sugar in the blood. Oh, I forgot to mention what her BG actually was - 720.

Normal range for healthy child is 80-180.

Before insulin was discovered/created, children would go into diabetic ketoacidosis and die. There was nothing they could do but watch their child's organs fail and slip into a coma and die.

Type 1 Diabetes is an auto-immune disease. The body's own immune system starts to attack the beta cells in the pancreas. Over time, the pancreas becomes completely unable to produce any insulin, and consequently the body can't process the food you eat anymore and convert it into energy. Here is a brief description of how insulin works:

"insulin is a peptide hormone that’s made in the pancreas, an organ that contains clusters of cells called islets and beta cells within the islets that make insulin and release it into the blood. Insulin maintains normal blood sugar levels by facilitating cellular glucose uptake; regulating carbohydrate, lipid and protein metabolism; and promoting cell division and growth. It plays a major role in regulating how the body uses digested food for energy. With the help of insulin, glucose is absorbed by the cells of your body and used for energy.

When blood glucose levels rise after a meal, insulin is released by the pancreas into the blood. Then insulin and glucose travel in the blood to cells throughout the body. Insulin is responsible for several mechanisms throughout the body. It helps muscle, fat and liver cells absorb glucose from the bloodstream, thereby lowering blood glucose levels; it stimulates the liver and muscle tissue to store excess glucose; and it lowers blood glucose levels by reducing glucose production in the liver"

So yeah, basically from now on, without insulin, our daughter would not be able to live. Do me a favor and take a moment to ponder how truly amazing our bodies are - when they function properly. I know, it's hard to be thankful for every little bodily function, until you lose it. But God's design for our bodies is truly awe-inspiring to me. How any of this could be accidental - or the result of mere evolution from primordial soup is beyond me, but I digress. I'll just say, when disease kicks in and your body does not function properly, you reach a deeper level of appreciation for life.

From the local hospital Josie was transferred to Children's hospital in Seattle. I begged them to let me drive her, instead of waiting for the gigantic fuss of an ambulance ride. Josie was completely stable, alert, talking, smiling, and (I'm not sure about this, but I don't recall seeing it on any of the paperwork) she had not gone into ketoacidosis(?) despite her crazy high numbers. They obviously had given her some insulin there and we would just have to wait several hours for the ambulance team to get there, and I knew (from experience) that we would be stuck with a gigantic, ridiculous bill, for a stupid 30 min ride to Children's. ($75.00 per mile, anyone??) At first they said no, but then they agreed as long as I didn't stop anywhere and drove straight there, they would release Josie with me. They called ahead and had a room prepared for our girl.

Mike went home to get the kids settled and I drove to Seattle with Josie all curled up in the back with her blankets and pillows. It was an uneventful drive. We said a rosary and asked that we get there safely. I thought about our friends. I thought about our future. I was pretty calm but also probably in shock. I think we arrived at Children's around 2:30a.m.

The nurse got us checked in and Mike let me know he was going to come first thing in the morning after making sure the other kids had someone to watch them. We were told to prepare for a 3 day visit with Josie to become educated on diabetes management. At this point, I was really, really tired and stressed out. I tried to sleep but never got around to it. I was too amped up to sleep. I wish I would have tried a little harder because the next day was INTENSE....

The morning shift nurse looked at her schedule and tried to warn me that it was going to be very busy for me, and that she hoped I'd gotten some sleep (ha!) Mike arrived around 10a.m. and things got started quickly from there. We met with the Endocrinologist, a Social Worker, and a Diabetes Educator, who was wonderful. I loved her. When we had to get started with learning the equations for how to calculate the insulin she would need to take, I just remember sitting there looking at the white board completely dazed. I stared at the math and my head hurt (a migraine was setting in from stress and lack of sleep) and it was also completely blank. What the heck was this lady talking about??

Mike jumping right in.

I was really struggling and feeling very dumb because the numbers weren't making sense. But of course, Mike jumped right in and got it right away. And I mean, right away. He was totally following everything she was saying...but then again he got to go home and get a few hours of sleep. I was literally going off zero hours of sleep. I know the education classes had to start right away, after all, they didn't want us to have to stay in the hospital for any longer than necessary. I just wish someone had noticed that I was completely overwhelmed and could have used a few hours to process before I had to start learning all this important stuff. But alas, the medical stuff kept coming at us.

We learned that Josie would never again be able to eat food - well, any food that had carbs - again, without first dosing with insulin. If she did, she would run the risk of having high blood sugar. If she dosed too much, then she would run the risk of going low (low blood sugar) which is actually even more dangerous, because that's when you run the risk of passing out. (Yes, like in the movies.)

Basically, you really have to become the pancreas for your child. This means keeping their blood sugars in range all day, and all night. It's a challenge. Normal people's BG goes up and down - it doesn't stay at one number all day. In fact, the body is so sensitive and subtle that your pancreas can even start producing insulin when you *think* about food. It's crazy. Josie had to learn how to check multiple times a day with a finger poke and glucose monitor. Before we had the CGM (Continual Glucose Monitor, which is inserted under the skin and reads the blood sugar every 5 minutes) we had to check up to 10-15 times a day. When it's time for a meal or a snack, Josie needed lots of information in order to calculate how much insulin she needed to take before she could take a bite. So, first she has to plan what she is going to eat, and how much. Then, she has to do the math and calculate the dose. Then, she has to take the dose. Then, she has to eat everything she dosed for, not more, not less. Then, a little while after eating, if she starts to feel low or high, she would have to check again and make sure she was still in range. Phew! Can you imagine ONLY eating what you plan for, every time, every meal, every morsel??

At this point I thought of our friends who initially had to do this with a THREE YEAR OLD. And I felt very grateful that Josie was older. It would be hard enough making sure she was properly dosed with each and every meal, I could not imagine having to make sure a young child wouldn't reach up onto a table and grab some food without my knowledge. Shout out to any parent who has/had that situation to deal with. It would be so very hard and stressful. And a three year old isn't going to be as capable in telling you how they feel if they are starting to go low. My heart broke all over for my friends now knowing what they had been living with for many years.

And, I felt me heart breaking for Josie that this was now her reality. She would have to become even more responsible than she already was.

We love Fr. Michael! 

Later on that day or amazing, wonderful, holy priest came to the hospital to give Josie a blessing and to check on us. We are so unbelievably blessed to be part of a church community that is small enough to allow our priest to give each family, each member of his flock, attentive care whenever we need him. He was there the very first day we were at the hospital and wouldn't hear anything of us protesting, in case he was too busy. He came and cheerfully had Josie "warm up" the holy oil while he said prayers for the sick, then anointed her. He chatted with us for a while and told us that he would be praying for her and us. 

The rest of the day was filled with classes and visitors. We practiced calculating meals, giving insulin, and discussing sick day protocols. We learned about ketones (bad), honeymoon stage (good) and the future of potentially getting a CGM and an insulin pump. Mike did most of this stuff while I watched and cried. Seriously, I wasn't in good shape even though these two seemed to be totally fine with managing this life-long disease. 

Brave girl

I tried to stay positive, but I kept thinking about all the ways which Josie would be held back. I worried about leaving her at any time in the near future - maybe ever. I wasn't expecting that we would ever get to go camping again, that she could have sleepovers anywhere, or spend the day at a friend's house. I never got any rest that first day and my head ached more and more. Not too long ago, they would keep newly diagnosed patients for a whole week to teach them the basics. But they reduced it down to three days, which was great, except they really had to cramp in the material! 

That night, I got a little sleep but it was interrupted. Mike went home with kids again. The next day was more of the same. We met with her team, had more classes to attend, and tried to keep Josie in good spirits. She remained sweet and optimistic the whole time. I am so proud to call her my daughter. 

We were almost ready to leave but had one more night there. I just wanted to write down how I went home that second night in order to shower and see the other kids, but it was probably a bad idea. For one thing, I left the hospital, which is in North Seattle, at about 5:30pm that night. DUMB! It took me over two hours to get home, and you know what? I don't know how I didn't die. I was literally ugly crying the whole time. I kid you not, I cried for 2 hours by myself, trying to drive home. It was raining. There was traffic. I was trying to drive through tears streaming down my face. What was I thinking?? So stupid of me not to turn around and drive back to the hospital. 

Thinking about that drive home right now, I feel extremely anxious. It was horrible. Really what it was was an anxiety attack. But I kept driving and somehow I got home in one piece. (I honestly don't know how.) My brother in law and his soon to be wife had been helping my m.i.l watch the kids all that day. They had graciously kept the kids happy, played with them, fed them, and kept them safe, and I was so grateful. I felt bad that they weren't able to do their sight-seeing since they were in from out of town, but they kindly spent the day playing games with my kids all day. Louisa was really relieved to see me, as she was really the only one old enough to know what was going on. I told the kids we would all just watch a movie and snuggle up in my bed to sleep that night. By then, I had a full-blown migraine.

The next day my mom arrived at 8:30, and I headed back to the hospital. Thankfully it only took me an hour instead of two this time! The day was largely uneventful, just more education, and we were able to go home around 5pm that night. 

Command Center at home

We were sent home with ALL THE STUFF. Oh man, it was crazy how many supplies we went home with. Long acting insulin, fast acting insulin, pen needles, Glucose monitor, test strips, sharps container, emergency pens, alcohol wipes, diabetes worksheets, diabetes literature, diabetes literature for children (like picture books), carry case, keto test strips, hypodermic needles, and more. Again, I was overwhelmed but Mike was confidently taking it in stride (Josie, too.)

The first meal we had after getting home from the hospital was pizza. Yes, pizza. And that was dumb, but not for the reasons you might think. I guess it is a running-joke in the Diabetes community. Pizza is just hard to dose for. Anyway, we did our best and Josie survived her first night at home with a defective pancreas. As she has every night since then.

A few things I want to say about this diagnosis then I'll wrap it up for now, even though I have lots of other things I want to talk about surrounding Josie's diagnosis (maybe more blog posts in the future ;)

 One, there are so many misconceptions about diabetes. It's like with anything, until you actually have to go through it yourself, you don't really know. I remember thinking many thoughts about our friend's son before it happened to us. I thought, "Oh, he can only eat certain foods." "Oh, he has to get medicine every time he eats." and "Oh, poor guy, he won't really be able to do much in the way of activities." The truth is, kids with diabetes can eat everything everyone else eats. They have no barriers to playing sports. And insulin isn't technically a "medicine." It's a small distinction, but remember, insulin is a hormone. 

There are no foods Josie can't eat. A healthy, balanced diet is of course recommended, like it is for every child. But there are no special diets they recommend for Type 1 Diabetes that diverge from the diet they recommend for regular kids. This was really important for me to hear in the hospital because of course my initial idea of things was that our lives/meals would have to drastically changed for the rest of our lives. Not the case! Eating healthy foods was still the focus, as it had always been. And getting the kids daily exercise - again, nothing new for me since hello - I have five active kids that would drive me up the wall if they didn't have opportunities to run and move their bodies!

And get this; carbs aren't bad. Yes, you heard that right: Carbs. Aren't. Bad. Carbs are necessary and important, especially for kids! Also, sugar is not the devil. In fact, with T1D, sugar is live-saving if she starts to go low! Now Mike and I laugh because the impression you always get from the movies, is that kids are going to go into a diabetic coma if they don't get their insulin in the next five minutes! But really, it's more often the case that they will slip into a diabetic coma if they don't get SUGAR into their system! It's so interesting. Type 1 Diabetes is just one of those diseases that comes with plenty of false impressions. Unfortunately, it's definitely on the rise, and so mainstream awareness IS getting better, as many have told us. So it's good, but also bad that it's becoming more common. Perhaps the biggest misconception is that Type 1 Diabetes is caused by eating too much sugar. It's not. So just get that out of your mind right now. Josie, Louisa, Michael, Emmett, and Penny all ate the same foods. They all got the same vaccines. We ate/eat fruits and vegetables with every meal. We exercise as a family. And yet Josie's immune system was the only one that decided to start attacking itself. So that's that. Let's let the medical community and researchers do the laborious work of trying to figure out why. And let's not judge each other when a terrible disease pops up in someone's life and turns it upside down. It's no one's fault.

Okay, well I think I got that out of my system, but obviously there's so much more to say. I want to talk about how we've been managing since December 2018. I want to talk about Josie's CGM which we only got in June, and the plans to get an insulin pump, hopefully in the next year. I want to talk about Josie's shockingly good attitude about all this and her wisdom beyond her years. I want to talk about how she HAS had sleepovers at relative's houses, and participated in all the things her siblings have. I want to talk about my own feelings, anxiety, and acceptance of our new reality. I hope to talk about all of this in future posts! This felt great to write down and I'm so glad I'll have it in the years to come, so I don't forget some of the details of our family's experience. If you have any questions at all, please ask them! I'm happy to answer. We are by no means experts on Diabetes, but we now have almost a year under our belt managing it, and we can gratefully say that Josie is thriving. Thanks be to God!

Getting checked on our trip toWashington D.C.

Girlfriend knows how to check them carbs. 

I love watching her plan and measure. She is a superstar.

I love you so much, Josephine May!