One of many long nights

Soooo hating D right now. :( Poor little Brandan had 3 BG checks in a row in the 300s so I did a site change a day early, at bedtime. I bolused for his bedtime snack and added the correction. A few hours later while he was sleeping it was 429. 4-2-9! WTF? So I corrected it and just hoped I didn't have to do another site change. :/ It started to slowly come down. At almost midnight it was still in the high 200s. I went on to bed and set my alarm for 3am. I woke on my own at 2:13. I went straight to the meter and into Brandan's room without even thinking. His BG was 45. He and his bed were covered in pee from the previously high blood sugar. When I was getting everything together to clean him and his bed, I heard him talking. Very casually and conversationally. I only heard the words "smiley face gummies" clearly. I got into the room and asked Brandan who he was talking to. He looked at me with glassy eyes, pointed to his little brother across the room and answered, "I was talking to Logan." Logan was sound asleep. I told Brandan that. Brandan said he knew that, but he saw Logan move so he wanted to tell him something. I asked what he was talking about. "I told him that my sugar is low and I ate some smiley face gummies. It won't be low anymore. . . . Hey, do I need to get off the bed for you?" I don't know how he was talking, much less how he got up and assisted me with the clean-up.

I just did the fifteen minute follow-up test. He is safe again for a few hours. Now I'm about to check his little brother. I can spare him the horrific finger poke for the fasting BG test in the morning. . . . . . . . .

Before I even got this posted, I heard the little guy cry. His butt hurts because he has some kind of rash on it and he just peed on himself, too. Another clean-up job and then I checked his blood sugar. It was 76. His BG hasn't been high since the first 3 times I checked it, Tuesday morning being the most recent high. Still, it appears my second son has this dreaded disease also.

I'm going to toss Logan's pillow pet in the washing machine now. He was very upset about wetting it. Then I suppose I'll get some rest. If you would dare call it rest.

The D Word

Diabetes. We've all heard that word. Most of us have a clue that there is more than one kind. When my oldest (and at the time ONLY) son was in the PICU and I waited for the confirmation of his diagnosis, I *knew* there was 2 or 3 types of diabetes. I wasn't sure which was worse, I didn't know what their differences are, and until that day, I had never heard of a child having it in any form.

I learned all about type 1 (autoimmune) and type 2. I think it's fair to say that most of the population is aware of those two. Nobody really knows the difference, though, unless they are faced with it. Usually, you have to be faced with type 1 to even bother with learning the differences. Or so it seems to me.

I had heard of "pregnancy diabetes" (gestational diabetes). Much later I learned of a less common form of diabetes, ladent autoimmune diabetes in adults (LADA), sometimes referred to as type 1.5. I wanted to be "in the know" of these so I learned about them all. I have a good grasp on this diabetes thing.

My second son started showing those tell-tell signs of the dreaded D. He went from skipping naps 5 out of 7 days to sleeping 3 to 4 hours in the middle of each day. He went from being potty-trained to having accidents every day and every night. I lost count of how many times I filled up his sippy cup in one day. I decided to check his blood sugar. Two hours after his bedtime snack, while he slept in his Buzz Lightyear bed, his BG was 161. I panicked. An hour later I wiped his hand to make sure it is clean and checked again. 143. The next morning I checked while he was fasting. 104. All of these numbers are too high. Between then and the next 2 days, however, it stayed in the 80s.

I got the news yesterday that his A1C was 5.8 and there was no indication of type 1 diabetes. I was instructed to check his fasting BG once a week for a month and report it to the pediatrician. I am to consult Brandan's endocrinologist at his next appointment, for my second son. At his physical in July he will have a complete work-up done to test his thyroid, antibodies, etc., etc. I was/am relieved that he doesn't have it. Not now, anyway. I still wonder why he has the symptoms, if they are symptoms.

~*~*~*~*~*~ BOMBSHELL ~*~*~*~*~*~

Our wonderful, terrific, pediatrician called me today, from her cell phone, on her day off. She went to the lab to analyze Logan's urine herself. She saw that it was watered down. She thinks he could have a condition known as Diabetes Insipidus. IT IS NOT DIABETES. His pancreas is fine. It has nothing to do with INSULIN or BLOOD SUGAR. It's the kidneys that aren't getting their job done. Fluids are not being processed through the kidneys and into the bloodstream correctly. It would completely explain the drinking and peeing all the time and the fatigue. There are several sub-categories to this disease, which I will get more into when I find out which, if any, my son is afflicted with.

I have been instructed to make sure he has something to drink at all times over this weekend. Next week we will schedule to spend a night in the hospital. He will have a water deprivation test done to confirm the disease (yep, there's that ugly word disease again) and a MRI to determine what has caused it. The most likely cause is an underdeveloped pituitary gland.

So here is my tidbit for the day: The word diabetes is derived from the Greek verb diabainein, which means to stand with legs apart (as in urination) or to go through. Insipidus comes from a Latin word meaning without taste. In contrast to diabetes mellitus (DM), which describes the excretion of sweet urine, diabetes insipidus (DI) describes the passing of tasteless urine because of its relatively low sodium content.

We learn something new everyday, don't we? Oh, what fun it will be to explain these diabeteses (is that a word?).

************************EDIT*******EDIT*******EDIT*******************************

Within a couple of hours after posting this I got another call from the pediatrician. She consulted Brandan's endo and she (the endo) feels that Logan is in the beginning stages of Type 1 Diabetes. This has not been confirmed either, but it's practically inevitable. Turns out, the 5.8 A1C was not a good thing. It shouldn't be above 5.5

Interview with a 4-year-old diabetic.

Me: Do you know what diabetes is?

Him: It's an insulin pump.

Me: And what does your insulin pump do?

Him: It plays Twinkle Twinkle Little Star. (it does, for alerts) It's for when my blood sugar is high or low or just right.
And it keeps going up and it keeps going down.

Me: How does your pump help you with that?

Him: I just take some insulin.

Me: What's the insulin do?

Him: When it (blood sugar) goes high we just have to fix it.

Me: What do we do when your sugar gets low?

Him: Then you just have to give me some gummies or a marshmallow.

Me: Do you know anything else about diabetes, besides your insulin pump?

Him: I remember I had a hulk (infusion site) and it hurt my butt! It was over here (pointed to booty cheek) and I sat on it and it hurt my butt! So then you moved it over here (pointed to opposite booty cheek) and it doesn't hurt now when I sit down.... and sometimes.... I play with my toys and sometimes I do nothing....
I was at Daddy's job and my pump ringed!

Me: Oh yeah? What did it do that for?

Him: And I was running out of battery! It went BZZZ BZZZ and (laser sounds? lol) And I went and got in the truck and my pump ring again! And I went to a track and saw big cars! (Daytona Speedway) And I saw 2 cars! McQueen and The King! (now referring to toy track at store. lol) And my pump ringed AGAIN!

Me: Aww, man!

Him: Yeah! And then when we were in the car it ringed again! And when I got home my pump ringed again!

Me: Did Daddy ever push the button on it when it rang?

Him: Yeah. He did. That's all.

Me: That's all? That's all you know about diabetes, your insulin pump?

Him: Yeah.

Me: Can you tell me what diabetes FEELS like?

Him: Yeah. After, I feel better.

Me: You feel better?

Him: Yeah. After I got sick. My sugar was LOW...........

Me: Anything else?

Him: I don't know... I think that's all about my diabetes.

Me: (something I've been wondering lately) Do you ever not like your diabetes?

Him: Yeah, like when it gets low.

Me: When it gets low you don't like it? (He shakes head) What about when it gets high?

Him: When it's high, I just get some insulin and we fix it and we check on my sugar.

Me: How do you feel right now?

Him: I'm feeeeeliiiing.... just fine.

Me: So you don't think your sugar is high or low right now? (because he looked it)

Him: No. (it was 77)

Me: What about checking your sugar all the time?

Him: I checked my sugar 4 days! And 5 days and 6!

Me: You did?! Does that ever bother you?

Him: No. That's all about diabetes now.

Synopsis: It's all about the insulin pump for him! I never realized that! The only thing that bothers him is lows. How 'bout that? I can't say it surprises me. Can't say it makes me feel any better either. For the record, we all learned a lesson on that day out with Daddy. He will be taking the little emergency kit with them from now on. It has extra batteries. I asked Brandan if it made him mad that his pump kept beeping. He said, "No. It freaked me out!" I wanna laugh while I cry about that one!

Dear Diary,

Things didn't turn out the way I imagined. When I was pregnant with my first son I always, for some reason, had an image play in my head of his first day of school. I envisioned a blonde-haired, blue-eyed boy standing next to me while I introduce him and myself to his kindergarten teacher in front of the classroom. I didn't expect that boy to have the curly-do he has now. I sure hope he still has it when he gets there, though.

Nowhere in my thoughts did I think he would be going to the clinic on his way to his kindergarten class. On his way to and from lunch. Before recess. Before PE. Never, did I think my child would need constant medical care in school or at home. I didn't plan on having "emergency" kits in the diaper bag and purses I carry.

My pregnancy didn't end in a usual way. The result was a baby that came before he was due and put in the NICU. Nobody expects something like that.

I didn't know that the only big milestones he would reach disease-free were to sit up on his own and crawl.

I didn't think about giving him a shot when he ate his babyfood. Or his first real meal. I would have never thought that a glass of milk would be so much trouble.

Doctor appointments were expected, but I didn't count on living from one scheduled appointment to the next.

I thought I could raise a child and do something right for once. I would have never thought that I can't raise him without a medical team.

On a different note, Diary, I didn't know how impressed, challenged, proud, and oh-so-very-loved I would be.

My first son was born with an old soul and it has served him well. He is wise beyond his years. Strong. Eager to make me happy. Fast to learn.

My second son looks like the one in my vision of the first day of school. My second son is the one I thought of when I was pregnant. He is smart too, maybe even beyond his years. He's a good boy, but.. lol... he is the one that every mom "hopes you have some day".

Diary, in my wildest dreams, I never thought I, Trish, little me, would have THREE boys! Up until the minute I heard my third son cry, I wouldn't have believed it. He was my second baby to start life early and in the NICU.

Still, I didn't realize how fragile life is until I saw him die and come back. I said it. He died. But he isn't dead. He is here and he is strong.

I have been in 4 ICUs for 2 children. I just realized what I.C.U. really means. It means, YOUR CHILD'S LIFE IS IN DANGER.

Dear Diary, I love my children just the way they are. All of them. Always. So don't take any of this the wrong way. If I had the choice to start over, I wouldn't.

Written Proof

My heart pounded, my head spun. I was only filling out paperwork. I was registering my baby for his first year of school. I was answering the medical questions.

Does your child have a life threatening condition? __yes __no
I checked yes

Does your child take medication that could be life threatening? __yes __no
I checked yes

What is you main concern about your child's medical care at school?______ _________________
No room for the essay in my head, so I said, "His blood sugar needs to be checked often. I'm concerned that he will go low and nobody will notice."

EMERGENCY CONTACT INFORMATION
I left that whole section blank. Because if there is an emergency and I or my husband can't be reached, the doctor is the only other option. Nobody else knows what to do.

This sucks. That is all.

IT HURTS

I have a good D-Mom face. A face that lets everyone, all the time, know that everything is fine even when it's not. Even when it's so far from fine that my insides hurt and my brain is swelling. I lost face tonight.

I changed Brandan's infusion site for his pump when he got out of the tub. The needle entered and exited his skin smoothly and he barely flinched. While I was clipping the tube to the site on his hip he had one simple request, "Don't hurt me anymore, okay?" I stared straight in his eyes and debated what he meant. Right now while attaching it, maybe. Hopefully. Because once-in-a-while he complains about that. "Mama. Stop hurting me, okay?" The screaming inside my head went something like this: SOMEBODY DOOO SOMETHING! MAKE A NOISE! LOGAN! DISTRACT HIM! JONATHAN! COME INSIDE! OH GOD, HE'S STILL LOOKING AT ME! HE'S WAITING FOR ME TO ANSWER! "ooookkkkaaaaayyyyyy, mmmmmaaaaaaammmmmmaaaaaa?" (Slowed down for dramatic effect) Teary-eyed, I told him that I WILL hurt him again because he's gonna need more hulks (the name he donned his infusion sets). I finished with the task of getting his pump ready to deliver the insulin. "Why? Why do you have to keep hurting me with hulks?" I tried to squash all emotion when I said, "Because you need your pump, Brandan." FAIL! His big blues met mine and he said, "But mama, when you hurt me like this it makes you so sad." I sputtered out some nonsense, "It makes me a little sad, but I don't mind because I know that it will only hurt a minute and the insulin will make you better for 3 days before I have to hurt you again."

Okay, let me tell you why that didn't make any sense. First; I lied. Bold-faced. It makes me a lot sad. I mind it every minute of everyday with every breath. I don't know if it will be 3 days before I hurt him again. I could have to wake him up tonight to hurt him. Hell, if the lancet hits him wrong when I check his sugar I will hurt him.

Second; It doesn't "make him better", it keeps him WELL, it keeps him ALIVE. And THIS is what almost came out of my mouth tonight: I HURT YOU SO YOU DON'T DIE!

Something I've been thinking- that's all.

I love the DOC. I don't know how I lived without them for the first 2+ years of diagnosis. They are always there to answer my dumb questions and make me feel not-dumb about asking. They have a way of saying exactly what I need to hear exactly when I need to hear it. They give me advice when I need it without it sounding critical, sometimes when I don't even ask for it. lol. I have a confession.

Lately I've noticed how different it is for me. For us. For Brandan and I. I did not say BETTER. I said DIFFERENT.

Many well-intentioned folk like to tell me that it's easier for Brandan because he was diagnosed so young. It's supposedly easier because "he doesn't know any different." I myself have used that line, "he doesn't know any different", but that does not make it EASIER for him. And truth-be-told, he does know different. He knows that nobody else checks their sugar before they eat. He knows that nobody else puts all their food on a scale. He knows that nobody else wears an insulin pump. He knows that nobody else gets up in the middle of the night to eat to save their life. He's 4 so when I say "nobody", it means people he knows, k? ;-)

Oh, I strayed from my point a little. My confession. It looks like it might be just a little easier for ME in comparison to other D-Moms. I read blogs and FB posts that break my heart everyday. D-Moms get scared when they watch their D-child run and play outside. They fear their sugar will go low and she will miss it. They feel sorry for their D-child because of the burden they carry and I don't blame them, not one bit. They stress over the first of each holiday with their D-child. They worry about the candy, the parties, the new foods, the activity. They wonder what they should do with insulin doses, they wish they could leave the child alone for just one day and let them be a kid. And I don't blame them, not one bit.

It's different for me. It's different because I never knew what it was like to watch him play outside without D. He never ate candy, or big dinners, or ran around at parties without D. I was a mom for 12 months. I've been a D-Mom for almost 4 years. So maybe it's easier because it's all I know.