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.

 

Second Checkup

Sam had his second checkup yesterday.
He's put almost 5 pounds back onto his 4 year old frame, which doesn't sound like much, but is actually 16% of his total body weight.
His average blood sugar level taken over a period of 6 months, in this case was 180. That was lower than the high 200s that he showed at our first appointment, before the official diagnosis.
We were told that an insulin pump will run us about $5500. So we are taking donations. :)
We met with both his doctor and a nutritionist. Both said we are doing a good job. That's encouraging to hear, because some days I feel like I'm doing a miserable job at taking care of my child. His blood sugar levels have been dropping significantly lately, which has confused us. Some days we intentionally undershoot him with insulin, hoping to normalize him and keep him from dipping so low below 100. It hasn't been working.
They informed us that this means that Sam has entered "the honeymoon phase." We had read about this and our doctor had talked about it, but we didn't know when it would start. No one does.
The Honeymoon Phase occurs after a Type 1 diagnosis. In very simplified terms, the very tired pancreas gets to take a breather while the insulin injections take over. In Sam's case, at the time of his diagnosis, his pancreas had not yet shut down completely. He needed a very small amount of insulin to normalize his blood sugar. With practice, we were able to figure things out and generally could predict what his blood sugar number would be. Not always, but often.
Over the past couple of weeks, however, his numbers have been consistently low and confusing. That means that what is left of his beta cells have started working again, so he requires less insulin than he did before. This honeymoon phase can last a few months or even a couple of years. Eventually, his remaining beta cells will stop working and his body will be completely reliant upon the insulin we give him.

That might be more than you ever wanted to know about Diabetes.
Me too.
And yet, that is where we are.

This handsome boy turns 4 in just a matter of days. He seems much older than that. He has been forced to grow up a lot in the past 3 months. He asks about carb counts, he handles his syringes gently and carefully, he no longer fights or complains about being poked and prodded. God has been gracious to him and to us throughout.

Month 2

As we enter month two of life with diabetes, it seems we've all come a long way.

Long gone are the days of screaming and fighting and crying with every injection and every blood test. These days, Sam is calm, relaxed, and compliant.

Each day, the advice of our doctor and nurse makes more sense. They have both said to us that caring for diabetes is an art, not a science. We can never, NEVER predict what Sam's blood sugar will be. All we can do is test it and then respond or react to the number.

Even when we account for every carb and correct his blood sugar with insulin, we so often see a number higher or lower than we expect. It doesn't mean we've done something wrong or bad, it's just information that we have to respond to. This has helped relieve some of the emotion and guilt I was attaching to his results each time.

Our nurse is incredibly amazing and reachable. We have called her on her personal cell phone countless times (even on Christmas Eve!!) and she is always helpful and encouraging. She has helped us to troubleshoot and figure out what seems to be the best balance for Sam.

He requires both fast-acting insulin (immediately after he eats), and longer-lasting insulin. Initially, we gave him his longer-lasting insulin right before bed. This insulin releases slowly and pretty constantly throughout the day, theoretically to keep his blood sugar somewhat normalized. However, what was happening was his blood sugar would be super low in the morning and would spike around 3 PM. So we started giving it in the morning, after breakfast. But then he started spiking later in the evening. Now he gets half a dose after breakfast and half a dose before bed. It's working for now, but it could change again.

We're still learning.

First Checkup

We went back to the Pediatric Endocrinologist this week. It seems strange that this diabetes thing has already been (and has only been!) a part of our lives for over 3 weeks now.

In that time, Sam has gained back about 4 pounds. His cheeks have their color back and he looks healthy and normal again. To be honest, we didn't realize just how sickly he looked until we looked back at pictures- then it seemed painfully obvious. Of course it also helps that both the stomach bug from hell and the fever and cough that plagued our house now seems to be gone.

Everything went really well with the doctor. He once again spent a lot of time with us- over an hour, educating us, asking questions, and encouraging us with his confidence in the technology that is on the horizon that will change Sam's life.

At home, testing and insulin injections are going more smoothly than before. In just the past few days, I've made myself start giving the insulin injections again. I had been relying solely on my husband to do them and had lost all confidence that I could even manage. Miraculously, Sam responds very well to me giving them and he isn't fighting as hard.  Praise God!