This is a Honeymoon? A day in our life during this phase.

When children (or adults) are diagnosed with Type 1 they will sometimes experience what is known as a honeymoon phase. Once Blaine began receiving insulin via injections, his pancreas remembered “oh, I have some insulin too”. Blaine was diagnosed before he was in DKA or in an “emergency” situation such as coma or seizing. So, I had assumed that maybe he did have a few insulin producing beta cells left that his body had not yet destroyed (type 1= autoimmune condition). If only there were a way to get to his beta cells and clone them!...?

Although, this brings back a memory, so I digress. In college I was in an honors biology class with 12 other students. We were replicating DNA. It was a whole semester worth of work in the labs. I was the ONLY one who failed to have my DNA replicate. It seems I treat science like I treat my baking. Who needs to measure? Seriously, with the DNA we were working with mirco-measurements. Would it really matter if I was .001 mm off? The answer, apparently, was yes. And the answer to whether sugar cookies will rise without baking powder is no, as my children like to point out every Christmas since the year I didn’t use any because it wasn’t on hand.

Back to the honeymoon. Probably a month after Blaine began receiving exogenous insulin (insulin outside his body via injection) we noticed that he needed less and less. His food ratios were corrected from 1 unit per 15 carbs to 1 unit per 45 carbs. That has since been readjusted to 1unit: 30 carbs. We also noticed that anytime we had to do a correcting does (use the formula BG-100/correction factor) he tended to drop quickly.

The past few days have been full on hyperglycemic and hypoglycemic days. Because Blaine was in the 200’s the other morning at 8am, I dutifully woke him at 8 am yesterday to check and make sure this wasn’t a trend.

Yesterday 6/27/13:

8:15 am- 121 (Good number! You can go back to sleep!)

10:00 am- Kids wake up. Aislin wants to play restaurant. She puts on her pink art smock with pockets. She had a notepad to take Blaine’s order. When I come back down stairs I see a carb fest in progress. Mini-wheats, toast, fruit…. Blaine asks Aislin if she put 21 mini-wheat biscuits in his bowl. She says no. They start all over with a new bowl, as the first was piled high with an undetermined amount and was now soggy with milk. He’s eating away, happy to have his sister serve him. I ask about insulin.

11:20 am- Blaine guesstimated 100 carbs, and did 3 units on his own. I’m glad to see him take imitative so I let him do it on his own. He tells me he got a vein and won’t stop bleeding. It’s a nano-needle. He won’t bleed out. I tell him he’s fine, never thinking about the fact that maybe not all the insulin got in him.

12 pm- He leaves to go play at Ben’s next door.

1:55 pm- He comes home to check his blood sugar. While he is supposed to be washing his hands he instead has his head turned sideways inhaling water from the sink. Polydipsia. This was a word we learned in diabetes boot camp. It means frequent or excessive thirst and is a sign of hyperglycemia.  I braced for a high number. He checks.

436!!! That can’t be right. I immediately pull out another strip while he still has blood on his finger. We check again.

448.

448 is the highest we have seen!! What went wrong?! I remembered what other bloggers had written. Don’t get hung up on the number, it just tells you what to do next. I take a deep breath.

I ask Blaine what he thinks happened (very calmly, as if we were watching a movie and I wanted his thoughts on the plot). He says maybe too much insulin leaked out with the kwik pen.

We do a correcting dose (448-100/80= 4.225). We give him 4 units. I know that this will likely drop him, so I tell him to be aware of an impending low.

3:04- 158, one hour later he has quickly come back to the normal range. We are now at the pool and kids are playing in the water.

3:29- The blasted ice cream truck comes by. The kids buy the overpriced sugary treat with their own money. I’m impressed that Blaine got an ice cream bar with only 14 carbs. For now this is a “free snack for him”.

Kids eat and then go off to swim.

3:43 pm- Blaine does the low stagger from the pool onto the chair next to me. He tells me he feels low. He sits. I wait for him to check his blood. 54. Yikes, we’ve been seeing these 50s every day it seems. I tell him to drink his juice. He sits. He tells me he can’t. Yes, he was feeling so low and he dropped so quickly that he was sitting there in a daze. I quickly get the juice ready and give it to him. About 5 minutes later he’s ready to jump back in the pool. I have him take a glucose tablet as well.

4:11 pm- Boys are tired of swimming and want to go back to the house. I tell them that’s okay as long as Blaine’s numbers are fine. He checks- 81. They take one walkie talkie and I keep one with me. Once home they decide that want to ride bikes.

This is where it gets tricky. Prior to 3/4/13 we would have encouraged Blaine to do just this. Put on a helmet and ride his bike with his friend. Everything is different now with the new normal. I decide that with the walkie talkies I can be in communication, and with Ben there with Blaine he could let me know if something were to happen. It’s called letting go, all over again.

The boys ride bikes. They radio in to tell me they are headed up by my cousin Tres’ house. I say okay. A few minutes later I panic. I can’t get them on the walkie talkies. I fear that they have decided to down this wooded trail that leads to the lake. I try not to panic. I text Ben’s mom to see if maybe they were back at Ben’s. I radio them, over and over. Nothing. What do I do? Grab Aislin from the pool, soaking wet, jump in the car and go to the trail? They know not to do something like that without asking!

Finally, a whole 5 minutes of torture later, I hear Ben’s voice on the walkie talkie. They are headed back home. Sure enough, I see Blaine and Ben, plus our cousin Hugh coming up the hill on bikes by the pool. I breathe a sigh of relief.

The boys go down the basement to play xbox. Aislin and I come home.  She busies herself playing restaurant again with the pink art smock, but this time with three customers. Another carb fest. I walk into the breakfast room and see toast, with cinnamon sugar, graham crackers, and banana with peanut butter. Blaine’s happily sitting with the other boys eating away. Did he check his BG before eating? No. Do we know the carb count? He thinks so.

6:11 pm- Blaine believes he has had 55 carbs so we do 2 units of insulin. What a drag, the other boys are now playing laser tag in the dark basement while Blaine has to go through the steps involved in doing his calculations and insulin. Even though I’m right there helping him, these are just some the minor bumps reminding us that his days are slightly different than his peers.

7:00 pm- The kids are still off playing. We’re out of good dinner options as we didn’t make it to the store. It’s turkey bacon and eggs for dinner or delivery. I order delivery.

8:00 pm- we eat. Blaine is a few bites into his steak and cheese sub. I ask if he checked his BG before eating. No. We are flying in the dark again. He says he feels normal…We correct for the sub with 2 units. I know we will need to check him before bed, but the numbers will likely be slightly elevated because it won’t have been two hours.

9:21- He’s 258, but the insulin hasn’t completely done its job yet. I do his 11 unites of Lantus (long-lasting insulin) and I head to bed.

10 pm- I tell him to sleep tight. Definitely above100 tonight so I’m not worried about him going low.

I'm not sure how different our days will look once his pancreas completely stops producing any insulin. I went to a Type 1 brunch this week and the other mom's assured me that it will actually be easier once he leaves the honeymoon phase. I asked them, then why is it considered a honeymoon? I thought honeymoon was supposed to imply something good. Seems more like chaos to me. I'll do a day in our life 6 months from now for comparison's sake.

Battle with a Bug

This morning Blaine woke up earlier than normal, before 8 am, so we checked his BG.

273. What?! That's too high for the morning.

I looked at his log last night. He was 111 before bed. He had done what I like to refer the “low stagger” up from the basement around 9 pm. He’d been playing xbox with his cousin Hugh after dinner.  He threw himself into the kitchen island where I was standing, almost collapsing, and stated "I feel low".

He's consistent with the low stagger so he really didn't even need to tell me he felt low. I already knew. We checked his BG. It was 51. Yes, he was definitely low. He had a juice box and two glucose tablets. I knew with a number that low we’d be checking again before bed. He needs to be at 100 prior to going to sleep.

One of my original biggest fears was him dropping too low while he slept, not being able to get to us to let us know, and then slipping off into a diabetic coma during the night, and me not being able to wake him in the morning.

We checked again 30 minutes after the juice. He was up to 111. I gave him the long lasting nightly insulin and we headed to bed. I reassured him that he’d be fine as he slept. After our advanced diabetes class he is now aware of the same risk factors I already knew. I had hoped to shield him from some of these things a bit longer. I emphatically told him that I was not worried at all, stated that he was 111 which was perfect for bedtime and told him to sleep tight and that I’d see him in the morning.

So, imagine my shock with him being 273 this morning. A few thoughts began running through my head: is he always that high around 8 am? He’s been sleeping in until 10 am most mornings. It could be that he is spiking every morning and we never knew. Now I need to check him the next few mornings at 8 am to confirm or disconfirm that hypothesis.

Turns out Blaine had another hypothesis. He told me that while taking a shower this morning he had a battle with a bug.

Blaine: I had a battle with a bug this morning.

Me: You had a battle with a bug?

Blaine: Yes. I had a battle with a bug just now, in the shower.

Me: I see. You think that raised your blood sugar?

Blaine: Well... (He's looking off, thinking back on the battle.) It was pretty intense.

Those stupid centipedes. I’m called once a day to kill a bug during the summer. I guess he tried to tackle killing his own bugs today. We've found that adrenaline will raise his BG at times.

Then he returned to eating his 21 mini-wheat’s and cup of milk (FYI-58 carbs). We used his current correction calculation (BG-100/80) plus carb ratio (1unit:30 grams of carbs). So he had 4 units (273-100/80 + 2 units for food).

Babies get diabetes too

Today Blaine and I woke up like we would for a school morning and left the house by 7am to be back at Scottish Rite for an advanced diabetes class. He told me on the way there that he was happy that he would not need an IV going into the hospital this time.

We arrived 30 minutes early and were directed to the waiting room. I didn’t realize that we’d be treated like a patient. We had to wait to be called back to verify the insurance coverage for the class. The person checking us in was like a robot, or an assembly line worker. She made minimal eye contact and typed away on her keyboard. I was getting a little frustrated, realizing that even though we got there 30 minutes early, we may still not make it to class on time. My phone showed we had 5 minutes until class started. I finally broke the rhythm of her incessant typing and stated, “You do know that we are NOT checking in, right? We’re here for a class.” She verified that she knew that. She asked for my ID, asked me to electronically sign a few things, and then we were headed back down the same halls we walked back in March.

Thankfully class had not started when we walked in. We were handed a packet of information and then headed to find a seat in the mini auditorium. I moved us toward the back. Once settled, I took a moment to survey the room. There were maybe 7-8 families there. Half had children with them that were Blaine’s age or older. Except for the family in front of us.  I noticed that they had brought a baby. A little toddler who was moving all around. I thought, my goodness, could they not have found a sitter, how are they going to focus with a baby there. Then I looked to find the older sibling. The one with diabetes, the one that had to share their parent’s attention with a baby, brought to a four hour class.

But I didn’t find an older sibling. All I saw was the mom, dad, baby and a grandmother. Then it hit me, this baby couldn’t be the one with diabetes, could he? I leaned over to Blaine and said, “I think that baby might have T1”. I then leaned way over into their row, in front of us, to investigate. Then I saw it. The same green cameo bag that Blaine has, the hospital issued T1 bag. There it was on top of their diaper bag.

How, why? Why would a little chubby toddler have diabetes? This baby who was likely only 12 months old had to endure multiple finger pricks and multiple daily injections, just like my 10 year old, but he was only a baby!

The thoughts that keep me up at night, my worrying about Blaine’s fingers becoming calloused from the constant finger pricks, or his body needing more and more insulin as he ages. She has those thoughts too, except for, she will have that burden 10 years longer than me. I had 10 years of freedom from these thoughts. What did she get? Maybe eight, nine or 10 months? My heart broke for her and her little boy.

I realized that she likely brought her baby and mother for the same reason that Blaine has 99% of his play dates at our house now. She probably couldn’t stand the thought of being away from him for 5 hours. Who would read his signs to know if he’s going too low? Who would notice if he’s high, or make a judgment call if needed about a correction dose? Who would do the calculations to figure out the insulin for the carbs in the food he had eaten?

I sat throughout the class wondering, how is she going to do it? How will she send him off to preschool, or play dates, or the first day of kindergarten. Will she let him go off to sleepovers? These are anxiety provoking events for most parents. But to have a child with a medical condition, a condition that while it can be managed, can also turn into an emergency situation at any point in time….how will she do it? My heart goes out to her and the other parents of babies with Type 1.

Six Degrees

Prior to Blaine’s diagnosis I didn’t think I knew anyone with Type 1 diabetes. Since his diagnosis the following series of events happened:

· We learned that there were 3 other children at his school with T1. Two are his same age. One is younger, just finishing 1^stgrade. The younger one rides Blaine’s bus. All three of these children live in our neighborhood.

· Blaine’s pediatrician has T1. I thought he wore a beeper. Turns out he wears a pump. He called to check in on Blaine at the hospital, offer his support and let us know he’s on the board of Camp Kudzu, and to also let us know he is T1.

· Blaine’s good friend’s mother is T1. Again, I thought she wore a beeper. She too wears a pump.

· When I took Blaine to have a retina scan (since blindness is now a risk factor) our eye doctor let us know his son who is in college is T1. He spent extra time looking over Blaine’s scans and talking with us.

When I think about these things I know we’ve been relatively lucky. Blaine’s school nurse was very experienced with T1 management. Blaine, when diagnosed, already knew two other kids his age with T1. He has a friend whose mother immediately reached out to us. His pediatrician is T1 and reached out to us. His eye doctor understood why I made an appointment for my 10 year old to have a baseline retina scan. We’ve gotten more support than most I would imagine.

But, still.

I don’t want my son to have a pump.

It’s not that I don’t want him to have a pump and the freedom it brings. I don’t want him to have to need a pump. It makes me sad that one of the things he wants in life is a pump. When cleaning out his book bag this week I found a sheet with goals for 2013. He wrote “get a pump”. His body needs an artificial part to do the job his pancreas is failing to do.

Why?! Why him?! Why any child?

At the end of the school year I was walking past the conference room at one of my schools. I saw a teacher in there and for the first time noticed that she was wearing a pump. I stopped to ask her about it. She told me that T1 diabetes was her 40^th birthday gift. I told her my 10 year old had T1. She went on to tell me how tough it is and how her stomach looks so bruised from the infusion sites. I wanted to tell her to shut up. Didn’t she realize she had 40 years of life free from all of the cumbersomeness of diabetes? My son got 10 years. He got 10 years of a normal life. I know that in that moment she was only thinking of herself and not that fact that she was talking to the mother of a child that would gladly switch places with her son if she only knew how. Give me diabetes! Not him!! I still have moments that I want to scream and shout. I don’t want this for him.

But then I remember that there are families that had children diagnosed at less than a year, or at 2 years or 4 years. I know it’s not cancer. We aren’t going through chemo, radiation, or blood transfusions. This is a manageable condition. But, still.