The Days Before the Diagnosis: Take 2

On Wednesday, April 11, our 17 month old woke up fussy and a bit warm. My husband held her and made his breakfast while I continued packing lunches for our other 3 kids. Harper started to gag so my husband rushed her to the sink right before she vomited up a bit of mucus. She was fine after that, and we didn't give it much thought. She continued to feel warm most of the day, but her temperature hovered around 99. I thought maybe she was cutting a new tooth, and settled on the couch with her for most of the morning. She napped, we drove to pick up her siblings and played outside for about an hour after school. She only played for a while and then spent time in my lap. She slept hard that night, and had soaked through her diaper, which hadn't happened in quite some time. She woke up a few times throughout the night and asked for a drink each time.

The next day was very similar, although her fever was hanging around 100.3 and she just wanted to sleep most of the day. When my husband came home for lunch, he was once again holding her in the kitchen when she projectile vomited all over the floor, cabinets, and herself and her father. She was sleepy and cranky when she wasn't being held. We weren't overly concerned, as she still seemed pretty normal, just tired and not feeling quite right. 

By the time my husband got home from work that evening, he noticed that her breathing sounded a bit strange. I hadn't noticed it too much because she hadn't been awake much all day, just napping and nursing and napping some more. She wasn't wheezing, I would describe it as grunting, almost as if she was trying to poop but couldn't. (We now know this breathing is called kussmaul breathing and it's classic with kids in DKA.)

That night was rough. Harper didn't sleep well, and she soaked through 2 diapers in the course of the night. Each time she woke up, she begged for "wawa" (water) and drank like a camel in the desert. We had never seen her do anything like it. My husband thought maybe her throat was sore. She had obviously been fighting a bug of some kind. Way, way, way in the back of my head, diabetes crossed my mind. But I didn't give much merit to it. She's still a baby! She's just got a stomach bug! Though the excess thirst and urination did make me wonder. 

On Friday, my husband drove our oldest to school and then stayed out at a coffee shop to work on a class he was teaching, while I stayed home with the younger 3. Harper's breathing continued to disturb me, so my husband and I started texting our doctor friends from church. One friend said to wait it out and monitor her breathing, while another said the breathing was concerning. I also tried to get her in to see our pediatrician but she had no availability. Based on what I was describing with her breathing, the nurse recommended we head to urgent care or the ER. My mom-sense was on edge and I was starting to think we should just take her to be seen. I convinced myself that Harper's feet were starting to look blue and worried that she wasn't getting enough oxygen. I held her and thought her lips looked blue as well so I called my husband to hurry home so we could take her in. 

I put her on my bed so I could change clothes and brush my teeth and as soon as I laid her down, she vomited. She hadn't eaten in 2 days, so I was taken aback, but more concerning was the mud-colored sludge that came out of her. I shot my husband a picture and he thought it looked like blood. By the time he got home, I was mildly panicking and he affirmed when he saw her that she looked pale and blue-lipped. We headed out, not sure if we were headed to urgent care or the ER, when he made the executive decision to go to the ER. 

She must have looked worse than we thought, because despite the busy waiting room, a doctor immediately came out and listened to her breathing while I held her. He thought one side sounded a bit sluggish and thought a chest x-ray might be in order to rule out pneumonia. After a short wait, we headed back to get vitals and talk about what had been going on. We showed the doctor a picture of the vomit from the bed and he was obviously concerned. They led us to a triage room and started the long, arduous, torturous process of trying to find a vein on a small, dehydrated toddler so they could run bloodwork...

Baby Steps- Reflections on camp

Last week, Sam and his (non-diabetic) big brother attended a 5 day camp for kids with Type-1 Diabetes. Like any camp for kids, this one included lots of running around like crazy, large bouncy balls to be thrown at your counselors, crafts, snacks, and new friends. Unlike most camps, it also included daily informational sessions about hyperglycemia, hypoglycemia, insulin pumps, and the like. Besides some tears on the first day, ("I just haven't been away from my mom very much.") Sam had a great time. The director of the camp (who was also Sam's nurse following his diagnosis) was very understanding that my husband and I were hesitant to just leave Sam there for 8 hours each day. She sat with us that first day (when we stayed on the sidelines/within Sam's sight for the first couple of hours) and told us stories about past campers and their parents and the growth and change that camp provided for them. She listened as my husband reminded her of her words to us in the very first days of Sam's diagnosis- "Caring for  diabetes is an art, not a science." It made sense to her that it was hard to just hand Sam over and allow someone else to figure out the art of taking care of him.

But we did it. And he was and is just fine.

Turns out, diabetes camp was just as much for me as it was for Sam.

My last post details my absolute fear regarding Sam and Kindergarten. My hope for camp was that it would afford me some peace of mind regarding Sam being out of my care during the day. At camp, he was surrounded by nurses, nutritionists, and fellow type-1ers who were looking after him. If I couldn't be comfortable and confident leaving him there, where could I?

Sam only cried a little on the first day. I, on the other hand, cried a lot. Not because I worried that something was going to go wrong with Sam. On the contrary, I really did have faith in those providing his care. My tears came as a result of some very mighty work of God in my own heart.
God used Camp NoHiLo to help me to realize that the control that I think I have is an illusion. He showed me that I cannot put my children in a bubble and protect them from harm (and they would resent me if I tried). He showed me that He writes their stories, not me, and that is a good thing.
Those realizations were both really good and really hard (as the work of God usually is...simultaneously).

The Truth is...I'm Scared

Sam starts Kindergarten in the fall. He'll be attending school with his big brother, his best friend, his cousins, and many friends from church. He'll only be there two days a week.  Many of the faculty and staff and administration are close friends from church. I have all the confidence in the world in our school. But if you ask me how I feel about him being there, I'd tell you- I'm really, really scared.

Fear is what overwhelms me when I think of him being out of my care two days a week.

In the past month, we've had two of the scariest moments in our diabetes history. Sam had a stomach bug, which kept his body from absorbing anything from the food he was desperately trying to keep in his body. As a result, he had too much insulin in him and his blood sugar crashed so low that we had to give him an emergency shot of Glucagon. Then, just a couple of weeks ago, Sam was at our church while Charles and I were nearby at a party. We managed to bring the wrong insulin (his slow-release kind, that he takes before bed, instead of his quick-release one, that he takes after he eats). As a result, his blood sugar was so high that his monitor couldn't even register it. It just said, "High."

Both of these situations could have resulted in a trip to the hospital. In both cases, God graciously took care of Sam. Both of these situations happened on our watch.

Sam will only be starting Kindergarten if he gets a pump this summer. I can't physically be at the school every time he needs insulin, and I don't think it would be wise to rely on a teacher to do it. So a pump is a requirement. He's had his blood work done, which was the first step in the process. He goes back to the Pediatric Endocrinologist next month, where hopefully we will be discussing the next step. Our doctor has given us all the confidence in the world that a pump will change all of our lives for the better. More freedom, more independence, more control, more consistency. He assures us that it will take no time at all for us all to get used to it. I believe him. I trust him. But life with a pump is a reality that we haven't experienced before. I'm having a hard time being confident in something that I haven't experienced yet.

I know Sam isn't the first diabetic 5 year old to go to school. But he's my diabetic 5 year old.
More updates to come as this story continues to unfold. Thanks for reading and caring, friends.

Reflections on One Year

On December 8, 2012, we discovered Sam's Type 1 Diabetes. We just filled up our first log book, which we use to track his blood sugar and insulin dosages.

A LOT has changed in one year. If you've followed this (rarely updated) blog from the beginning, you will remember how truly awful the first weeks of life with diabetes was for us. It wasn't just the huge life-style change, it was Sam feeling desperate to control something in his 3.5 year old life, it was a truly horrendous stomach bug that further complicated everything. It was fighting, literally fighting through every blood sugar test and every insulin administration. Have I used the word hellish yet?

When people ask me these days "How's Sam doing?" I can honestly say he's doing really well. He probably doesn't remember a day when he didn't have diabetes. His doctor is amazing and makes small changes at almost every appointment that always have a good affect. He is encouraging to Charles and I and always reminds us of the hope on the horizon, of the technology that will surely change Sam's life someday soon. Sam is very comfortable testing his blood sugar himself, and lets his big brother do it sometimes. Like most young kids, he's a creature of habit, so we test him in the same area (forearms) and administer insulin in the same area (his hindquarters) every time. We do what works for him and for us.

As I anticipated writing out these thoughts on one year, I wanted to do a "day in the life" post for you, spelling out a typical day. Well, no day is truly typical with diabetes. But here's a general idea:

• Sam wakes up, we get a blood sugar reading
• Sam eats breakfast, gets insulin for what he eats, taking into account his blood sugar reading. He also gets 3 units (this is a recent change, it used to be 2) of his slow-release, long-acting insulin.
• Around 3 hours later (hopefully lunchtime), check Sam's blood sugar again. For the most part, we've eliminated mid-morning snacks, which really helps. 
• Eat lunch, getting insulin for what he eats, taking into account his blood sugar reading.
• Around 3 hours later, check Sam's blood sugar again.
• Eat a snack, getting insulin for what he eats, taking into account his blood sugar reading.
• Around 3 hours later (hopefully dinner time), check Sam's blood sugar again.
• Eat dinner, getting insulin for what he eats, taking into account his blood sugar reading. 
• My kids are bedtime snackers, so Sam often eats something before bed. He gets insulin for that (usually without a blood sugar reading beforehand), then another 2 units of his long-acting insulin. 
• Kids go to bed. 
• 3-4 hours later, when Charles goes to bed, he checks Sam again and adjusts as needed- if Sam is low, Charles wakes him up and gives him a glucose tablet. If he is high, he gets insulin. 
• Often, if Charles has to give Sam insulin in the middle of the night, he will check him again another 3 hours later, just to make sure he's not crashing.
• Repeat. Every single day. 

In the past year, we've had only 2 date nights that allowed us to be away from Sam for more than 3 hours. Both times, good friends who also happen to be nurses watched the kids for us and administered Sam's insulin for us. This needs to change. We need more dates, and WONDER OF WONDERS, a night away. That's not completely the fault of diabetes. Our 10th anniversary is next month and our last night away was on our 5th. No lie. That's insane. Maybe that can be our goal for year #2.

God has been so gracious and merciful to us. He has blessed Sam with health. He has blessed us with supernatural patience. He has surrounded us with a community of family and friends who love us, love our kids, and want to help us. We are so thankful. Personally, I would give almost anything to change this part of Sam's story, but I know from my own life and my own story and my own experiences that God has a plan. He has a reason. He has wisdom that far exceeds my own.

So here's to another year.

On the horizon

Sam went back for a check up a couple of weeks ago. His A1C was still a little high, so our doctor adjusted his insulin ratios (he now requires a unit of insulin for every 20 carbs he eats, as opposed to 1 : 30 as we had been doing). We've already seen great results from this change. His blood sugar was staying high (in the 200's) pretty consistently, so this change has brought those levels back down to where we want them to be. It amazes me how knowledgeable our doctor is. I'm so thankful for him and his staff.

At this very moment, Sam is out running errands with my husband. With a big old wad of guilt in my throat, I will tell you that it is a relief to "get a break" from diabetes. If Sam were here, I might have had to push back lunch for another 45 minutes or so, instead of just feeding my hungry children (and my hungry self). His schedule often dictates the rest of ours. Instead, I was able to cook an early lunch, complete with dessert and minus the effort of measuring out and weighing every component of the meal. It was a great feeling. No pausing in the day to check blood sugar, no carb counts to keep track of, no insulin to measure out and administer.

At our last appointment, our doctor told us that Sam is ready for a pump whenever we are. I cannot tell you how wonderful it was to hear those words. Not only will he feel better and be more regulated with a pump, but it will also free up other people to take care of Sam for us. Right now, it's all us, all the time. And it's exhausting. (Guilt wad still holding steady...)

Yes, we could probably ask for help and train someone that we love and trust to take care of him. No probably's about it-- we can and should do that. But it feels like a LOT to ask someone. It feels like there's so much headache and hassle and worry involved- for us and for the other person. Sam having a pump will help tremendously in this area. Instead of having to learn how to give him injections, a person will simply have to enter a number into his pump and it does the dosing for them. Life-changer.

On Wednesday, my husband and I are going on a very rare, very exciting date to see Wicked. The kids will be left in the care of our friends, one of whom is a nurse, the other a former scrub tech. We're handing over Sam's care for a few hours and the timing may work out to where they never even have to worry about a thing. It's a big first step, either way.

So I'm tired. I'm grateful. I'm optimistic. I'm surviving. I'm making it. I'm ready for change. I'm hopeful for change. I'm thankful.
I'm a mom of a boy with diabetes. And he is so much more than this stupid disease.

It touches everything (or, the post in which I whine a lot)

If you ask me how Sam is doing, I'll tell you that he's great. He's adjusted well, he's healthy, he doesn't complain any more than the average 4 year old boy (all the time). Kids are resilient, right? Kids adapt, right?

But I'm 31 and I'm tired of adapting. I'm tired of diabetes.

It messes with everything. It touches everything. It affects EVERYTHING.

If my (almost) 7 year old is any indication, boys are always hungry. But Sam can't just eat all the time. Everything has to be timed and monitored (pain-stakingly monitored) and insulin has to be administered. At our church picnic last weekend, my husband had to watch Sam like a hawk to make sure he didn't sneak desserts off of the incredibly enticing dessert table. Or chips, or bread, or anything else. There were tears when he had to eat the chocolate chip cookies I made instead of the Wal-mart kind. (Thanks for that, kid.) There were tears for being forced to drink water instead of Sprite. There were tears when the kids in the moon bounce wouldn't stop jumping just because he wanted them to.
...Ok, perhaps I can't blame that one on diabetes.

The point is, this aspect of his life, the eating aspect (which is kind of a big one), isn't normal. It's not what everyone else has to think about, worry about, or deal with. Even if we shouldn't, most of us can eat whatever we want and not think twice about it (until the guilt sets in later for the 6 cookies we ate).

I want that for him.
And if I'm being honest, I want that for my husband and I, too.
I want to bake new things and bake more often.
I don't want to have to do math. That's why I majored in psychology. (Although OU had other plans for me.) I don't want to measure his cereal every morning. I want to give him cheese and crackers for breakfast so I don't have to get up off the couch.
I want to take him on a date to Starbucks and get him chocolate milk and a donut and not bat an eye.
I want to know that when he falls asleep in the middle of the day it's just because he's tired, and not because his blood sugar is potentially low.
I want to deal with attitudes and discipline issues and not have to second-guess that, maybe he's acting this way because he's low and needs a snack.
I want to go on a date with my husband and not have to worry about Sam or the person who's watching him.

I want easy.
And diabetes isn't easy.

The Love-Hate Relationship

We're nearing the 5 month mark with this new lifestyle.
A lot of things are easier, better, and less stressful than they were before.
Most days are okay. Meals aren't a huge chore, blood sugar is somewhat controlled on the okay days.

But then there are days like last Friday.
Ideally, Sam's blood sugar would hover around 100.
Here are his numbers from Friday:
110
219
113
53
109
300

He was all over the map. And see that 53 up there? That was at 5:21 PM. We were heading out to pick up dinner to take to a family who just had a baby. After that, we planned to meet Charles somewhere for dinner after he got off work. Sam was whining before we left, saying he felt "low." When he gets low, his says his stomach hurts. I told him he probably wasn't low, but would check him anyway.
Keely, just trust him. 

I knew I had some almonds in my purse and figured I would let him snack on those in the car.
Keely, always grab a carb-heavy snack, just in case.

By the grace of God, I went back in the house and grabbed some goldfish.
I checked his blood sugar. 53. I apologized to him for not trusting him when he said he felt low. Then I handed him some goldfish to bring his blood sugar up a bit. When he has too much insulin in him, he needs carbs to bring him back to normal.

We stopped at Coolgreens for the food. I had called in the order but it still wasn't ready. Sam was still whining. I was getting frustrated. Then I looked at him.

Have you ever seen a person right before they pass out? The color is drained from their face, their lips are gray, they're clammy to the touch?
That was Sam. From the way he looked, I thought he was about to puke. He asked me to hold him. That was when I felt how clammy he was. I took the kids outside to sit on the patio. I gave Sam the almonds and told him to eat. He laid his head on the table and nibbled a few.

At this point, I'm pissed that the food isn't ready. I'm panicking. My husband calls. I tell him what's going on and he's panicking with me. While on the phone with him, the food is finally finished. I grab it, I grab Austen, who is shoeless, I grab Sam, who is struggling to stay awake. I carry them to the car, Noah following behind us, probably nervous about the way Sam looks and the prayer I'm reciting over and over and over, "Jesus, please help Sam."
Back in the van, I put Sam in the floor and force him to eat the goldfish. The blessed goldfish. The goldfish that probably saved us from a trip to the hospital. The goldfish that I almost didn't bring. He ate almost the entire package. The color was slowly coming back to his lips and face. Still, he climbed in his car seat and almost immediately fell asleep. I was still nervous.
We dropped off the food, I kept asking Sam ridiculous questions to try and keep him awake. Eventually, he stopped trying and fell asleep, head thrown back, mouth hanging open.
Panic mode again- is he in a coma? Can he not wake up?
"Noah, shake his arm."
Nothing.
I'm on the phone with Charles again, "I'm driving towards you, you drive towards me. I just want to be together. I'm panicking."
We stop in a parking lot and I check Sam's blood sugar again. 109. He ate enough goldfish to bring him back up. He woke up. He looked perfectly healthy and normal. Charles got to the parking lot, and Sam was all smiles and laughs and full of energy.

I was a wreck.

At one of our appointments, our doctor talked about the danger zones of blood sugar levels. 30's and 40's are dangerous and scary. Sam had to have been that low when we were waiting for our food. Despite that first handful of goldfish I gave him, he had still been dropping.
So I've had my first big scare.
I've learned some lessons.
We know that we HAVE to get a Glucagon shot, for use in emergencies such as this one. Basically, it's an injection that we would use if Sam had dropped to the point that he passed out and we couldn't get him awake to eat.
Scary stuff, right?

Diabetes, migraines, brain cancer- these things (among others) make me say "Come, then, Lord Jesus." Come and take us to that place where you "will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Revelation 21:4)  Until then, teach us to rely upon Your strength and Your grace and Your protection.