3 Years

Three years ago today, THIS happened.

The funny thing is, I don't remember life before diabetes. And I don't think that Adam does, either - heck, it affects the entire family. I wish Sydney didn't feel the need for me to test her blood sugar every time she feels excessively thirsty or hungry or tired. I wish I didn't worry that Adam is developing Celiac disease each time he says his tummy hurts. (Luckily his labs came back last week with no evidence of this - I was a bit worried this time with his excessive lows and complaints of stomach pain.)

We are lucky to have many things that make diabetes easier for Adam. The Omnipod has been a life-changer for him. He continues to never want to go back to a tubed pump. The Dexcom makes my life easier.

And the fricken-fracken new smaller pods are FINALLY on a truck on the way to our house as we speak.

We should be up and running with those in a few days. Heck, we've been waiting so long that right now I can't even remember where I stashed the new PDM. Hmmm. I'd better get looking for that.

Tonight is Adam's choice for a dinner venue. Right now he's leaning towards his favorite pizza joint. We will have fun, we will celebrate the fact that he can eat whatever he wants thanks to his pump and insulin.

And we'll get up tomorrow and do "diabetes" all over again.

Okay, really, I'll get up at 2 am because diabetes never sleeps. :)

A Story by Adam

Sometimes I think I'm really sucking at this parenting a child with diabetes thing. Frankly, that's most days. Because even when you visit the endo, and your child's A1c is 7.4, you'd think you'd celebrate, right? (It had crept up to 8.0 earlier in the year). But oh no...you feel bad because the doctor says he's having too many lows.

A mom can't win.

But tonight, I found something that made me sad a little bit, but also made me smile. Adam wrote this "story" in his journal.

"I have Diabetes. It means my pancreas doesn't work well. So I have to test the sugar in my blood."

"Diabetes is tuff. But I can live with it. Hopefully not forever."

"Soon they will come up with a cure for it. Then I will have it no longer." 

"But unfortunately not today. But I am fine with it for now."

 

 "But I still like my life even if it involves Diabetes. It doesn't mean much to me. Okay, maybe a little." :)

"I love my life."

Man, I hope so. Kid, we are going to get you a cure. I love you, buddy.

Another "first"

Ouch, right?

We had another "first" today, and not the good kind.

Yesterday, Adam's pod came off at school, so I ran over and changed it. Last night, the old site looked really red, so I put some ointment on it and a band-aid.

This morning, he was sitting next to me and when I looked at it, it felt really warm, and it was much more angry looking. I took the band-aid off and I saw oozing pus. :( I cleaned it again, and used a warm compress and covered it up again. I had a bad feeling about it, so I texted this pic to my friend who is a PA, and asked her what I should do. She said I should probably take him to urgent care to get some antibiotics right away.

By this time, he was crying because it hurt so bad. Luckily, our children's hospital has a satellite office for urgent care and we got right in. The doctor agreed something needed to be done, but he also wanted to try and drain it more first and swab it to test for MRSA. Poor Adam. He freaked about the pain so the doctor used a j-tip to try and numb it a bit. He got a little bit out and bandaged him up again. Diagnosis: abscess and cellulitis. He's on Keflex now, and hopefully we won't hear back from the doctor that it is MRSA.

After a milkshake and a warm bath to soak it in, he's feeling much better. I drew a circle around it with a sharpie to make sure it doesn't get worse, but I think we caught it early enough.

After 3 years, this is our first infection! Of course, I'm wondering why, but who knows. He uses his arms for pod sites pretty frequently, so we will give this arm a rest for a month or so. Hopefully this will be the last for awhile.

Adam is now being back to his "boy" self, asking me if there is more pus so he can see it. :) Boys like gross things!

Thanks to the DOC for all the love today!

Over it

What a night. Adam was high, high, high all yesterday, despite repeated corrections and temp basals. Jason had taken the kids bowling and to dinner last night so I could have some "alone time" and an hour into it, I get a call saying, "He's 489, his pump is empty and we are about to eat pizza and ice cream."

Sigh.

I drove the 20 minutes to where they were with 2 pods and a fresh vial of insulin. Good thing I packed 2 pods, because the first one screamed while priming. After I loaded it with 150 units of precious insulin, of course.

After giving him a ridiculously large dose of insulin, the night ensued with many lows (of course!)

I'm tired. Every once in awhile I get sick of it all. This is one of those times.

His numbers are a mystery to me lately. I know his A1c in August is going to suck. I keep trying to make changes, but I feel like the further along we get on this ride, the less I feel like I know.

To make matters worse, HE is sick of it. He used to just go with the flow and be so easy about it, but now even simple things send him into a tailspin. God forbid I have to give him an actual injection with an insulin needle (he seems to think those hurt worse than a pod change.) The other night I had to wrestle him to his bed, sit on him while he was crying and I was crying to give him an injection because his pod didn't seem to be working.

It seems like it's getting harder as he gets older.

One day a few weeks ago he said, " I wish I was never born." When I asked him why, he said, "because then I wouldn't have diabetes."

To make matters worse, diabetes is not the only thing he has to deal with. Which makes this just that much harder for all of us. I have all but given up patching his bad eye because...just how many things am I supposed to fight him on?

We have known for a long time that the next phase in his cleft lip repair was coming - and it is approaching soon. In October, he will have his bone graft. Taking bone out of his hip to be placed in his gumline. Along with a little lip revision.

He is NOT happy. And how can I blame him? He's had plenty of surgeries before, but he was younger and was unaware. I'm ashamed to admit that I would never really tell him about them (they were minor eye procedures) and we'd just show up at the hospital at 5am and get it over with. But now he pays attention during dr. appointments. He KNOWS what is going to happen.

After the surgery, he will be on a liquid diet for a week. Then soft foods for a MONTH. How the hell is diabetes going to figure into THAT hot mess?

No recess or sports for six weeks.

Shit, I just realized that he will not be able to do the soccer I signed him up for a few months ago!

So it's not just diabetes. It's all of it. I need to find a way to make him okay with all of this and frankly, I'm at a loss.

PS...still don't have the new pods. FU, Insulet. 

Whine with my Wine

We have been waiting.

And waiting, and waiting and waiting.

Back in December of 2011, we were told, "a few months, you'll have the new pods!"

Liars.

First they shipped to NEW customers. Now they are shipping to existing customers, finally. But it seems as though everyone on my feed has them and we still don't. I'm trying not to be bitter, because we love the Omnipod, but dammit, I just want these now for Adam's sake!

Mama's going to have to make some calls and be bitchy tomorrow. Sigh.

The last 24 hours...

...have kinda been a bit hellish.

Today I HATE diabetes.

I haven't written in months, mostly because at this point diabetes takes a back seat in our lives. Sure, it's always there, but mostly in the background.

Yesterday my sweet boy turned 7 years old. Today was his big party that he invited his whole class to - a fun Star Wars party at the park, complete with a bounce house. And light sabers made out of pool noodles (courtesy of Pinterest!)

Today also included Glucagon.

Right before Adam's party started, we tested his BG and it was 33. The lowest we have seen in years. And all he can think of is jumping in his bounce house with his friends who are arriving to his party.

We suspend insulin (I seriously just had thoughts of ripping his pod off of him) and tried to force some juice and soda down his throat. He wanted none of it, of course. It was his party! I made him sit for a few minutes until I couldn't keep him down any longer and then let him run around a bit. We rechecked and he was 65. Still not good enough to bounce in the bounce house - I convinced him to eat the frosting off of one of his cupcakes and then I let him go in.

Against my better judgement, sure, BUT IT IS HIS BIRTHDAY PARTY, DAMMIT!

I pull him out again, and he's pissed. I don't blame him one bit. He's getting super angry and refuses to eat or drink anything else. And then he starts crying and asks me if he's going to throw up. When he's super low, he gets that feeling and I could tell he was scared. I know that feeling that way is a precursor to passing out. I tested again and he was only 45.

The only thing I could think to do was a mini-glucagon dose. I wanted to save his party....and I wanted him to have a good time. He was hysterical at the thought of getting a shot, but I took him away from the party, mixed up the gluc, and gave him 7 units (one unit per year of age). He was so sad. I was so sad that I had to do that to him at his own birthday party.

I sat with him until he felt better and then he ran off with his friends. He still didn't feel good. He didn't feel good enough to eat a birthday cupcake. He didn't feel good enough to have everyone sing. After 30 minutes or so, he was back to having fun with his friends.

But I was mad. I still am mad and pissed at diabetes for robbing my son of having a great birthday. It is not fair that he can't have a bounce house at his party and not have to worry about going low. Now that I think about it....what was I thinking getting a bouncy for him?? Ugh. I feel terrible.

Diabetes Independence Win!

I'm sitting here at the urgent care with Adam, waiting to be seen like everyone else who's kid has a hacking cough and nasty sore throat.

So, obviously I haven't blogged in quite awhile. But I felt the urge to share a mini milestone of sorts with my DOC peeps ;)

Today we had school conferences for the kids right after school and I decided that the kids could play on the playground while we "conferenced" with each teacher. I figured they would be fine for a half hour or so. When he was tested before school was out, he was in the 200's with no IOB.

When we were done hearing glowing reports of how well our kiddos are doing (oh yes, I just mommy-bragged right there!) Adam came to tell me that he felt low so he tested himself and was 65. He and Sydney determined that he needed 2 glucose tabs to bring up his BG.

And on his daily log sheet for school, I found that Sydney had written this:

65 @ 1:40

I'm so proud of my kids!