I have really come to respect that little organ. It doesn’t matter how much we eat, exercise or stress over things, the pancreas knows what to do to keep levels in range. Working as Evin’s pancreas, my goal is to keep him between 80 and 200. We have been told that if we can hit that range 50% of the time, we are doing great. But it feels like we are failing him. We seem to be fighting lows all the time, which can then lead to these huge highs. My sweet little boy turns into a whining little monster when he goes high. And who can blame him. His head hurts, his tummy hurts, even his joints can hurt. But he turns his pain on his brother, and that just makes my failures twice as bad.
I know that these swings are “normal”, especially since he is still honeymooning. But knowing that doesn't help. It doesn’t even help to know others are going through the same thing (ok, that helps a little). But starting tomorrow we will have help on this journey of ours. Evin will be starting the Omnipod Insulin Management System. It wasn’t a hard decision to go on a pump (or, in our case, a pod). Trying to get just the right amount of insulin is almost impossible using a syringe or an insulin pen. We can now give insulin in .05 unit increments. No more shots, but we will have to replace the pod every 3 days – and that is not pleasant . Evin’s A1c was 7.1% when he was diagnosed, but up to 8.4% three months later. The pod should help with that. We have a lot of expectation for this little device – I hope we aren’t too disappointed.
But as sure as I am that the pod is the way to go, I still worry about this step. Right now, diabetes takes up about 10 minutes of Evin’s day (outside of the effects of highs and lows). He gets his hated, painful Lantus shot in the morning (his butt shot), and 4 – 6 shots of Novolog throughout the day. We also test his blood glucose 10 – 12 times a day. Lots of pokes, but it takes up just a small part of his day. Diabetes will now be “on” him 24 hours a day. I still have nightmares of those first few weeks and I do think there will be some tough moments going forward. But Evin is incredibly brave and never complains about having diabetes. Sometimes I worry that he doesn’t want to talk about having this disease, but he does want to know the ins and outs of the management. He always asks how many carbs he is eating and is beginning to remember some amounts. He loves to “dial-up” his insulin dosage on his Novolog pen and he always wants to know what his numbers are after we check his blood sugar. I think he will love his little PDM and I just hope that he will adjust quickly to the pod. We go live at 3:00 pm tomorrow and Donovan has assured Evin that he will be there for him!
The Omnipod has only been available in the Midwest since January and Evin will be the first child to use it at our endocrinologist’s office. I hope to video our first live insertion on Friday and post it here.
Wish us luck!
7 comments:
Oh, Kelli!
I'm learning SO MUCH! Thank you for being patient enough to teach those of us who have no idea what you're dealing with - whether it be Evin's dealing with it for 10 minutes a day or you worrying 24/7!
Good luck tomorrow! I'm sending lots of prayers, thoughts, and love. If anyone can make this work, you and Evin (and Donovan and Jack) can.
For now, all I can do to help you is pray, so you know that's what I'll do.
Lots of love,
Sue Gebel-Sue Gebel
I, along with other parents I know whose children are on the pump, had the same reservations about their child having a "machine" on them 24/7. But we also realized that the "machine" is well worth the results it provides of a more "normal" lifestyle.
Brendon had to go back to shots (after a minor pump malfunction) for a couple of days until we were sent a new pump. Let me tell you that he was visibly relieved to have his pump back on him again.
Evin seems like a sharp boy. He'll adjust absolutely fine.
He sounds a lot like Brendon in terms of his interest in the whole management process.
Although pumping can be challenging at times, it is well worth it. It is so much easier to bolus for food and give a correction with the pump. Your child will quickly adjust to the fact that he won't have to have a shot every time he eats. In a way, it will give him back his childhood. Pumping is not easier, but it is better.
I wish you the best of days today and from now on. I think you'll find the pod actually is less work than injections, even though it's on 24 hours a day.
I'm thinking about you guys today. I hope everything goes well.
Riley has been on the pump for 16 months now. The omnipod was pretty new when he started, so we went with Animas. But, the thought of no tubes is great.
And, when Riley started, I worried that it would make diabetes more at the forefront than it already was. That it was a visual reminder of his disease.
But, to tell you the truth, it actually helped diabetes fade into the background. Riley doesn't seem to even notice it's there. And, I spend way less time worrying about insulin doses and food.
The first few months were not easy, trying to get his basals figured out. Riley's A1C actually increased the first couple of months. But, once we worked out the kinks, it has been great. I can't imagine life without it.
To be fair, it's not easy being a pancreas. It does certainly make you marvel and respect the working pancreas.
Good luck today. As difficult as the site changes may be and as tough as it may be until you get the settings right, I think you're doing the best thing for your son by getting him on a pump. It's been 10 months for us. Wouldn't dream of going back to shots.
Damn, can't stop humming, "I am the walrus."
I am totally going to add "Professional Pancreas" to my resume. I love this take on it!
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