I'm feeling a little blah tonight. Worried, lacking confidence in my ability as a pancreas.
Tonight we had our first accidental pump site removal - Emma was in a timeout for screaming psychotically at dinner time (turns out her BG was sky high...so then I felt like crap). We have timeout in the laundry room and she sat down and leaned against the washing machine. As she stood up it got caught under the edge and just popped it out. Really, it wasn't a big deal. It didn't hurt her for more than a second and we just put a new site in.
But while I was getting it ready I asked her, "Are you liking having your pump?" She shook her head with a sad face. "You're not? Do you want to go back to shots?" And inside I was freaking out because I love the pump with a passion.
She said, "I just want to not have diabetes. I just wish there was a cure already," in a sullen, teenager type tone. We've been getting that a lot lately.
Heart. Breaking.
And then.
The first day Emma had her pump she pulled it out to show my brother. I had it locked, but apparently she had observed how to unlock it and she went on in to open it up and show my brother all about it. He told me about it a couple of minutes later and said, "She went in to a screen that said bolus or something like that?"
Obviously I freaked out a little and checked the history. Happily, she had not given herself a bolus, but I had a big talk with her and wanted her to understand that she could not do that. So I told her if she accidentally got too much insulin she could get sick and maybe even die. Maybe I went overboard adding that? I don't know. I just wanted her to understand how serious it was. She does really good about following the rules if she understands why they are there.
So tonight after we got her new site in I did her dinner bolus and accidentally pushed the wrong button and gave her more insulin than I meant to by about half a unit. I said, "Oh shoot." She asked me what had happened and I told her that I gave her a little more insulin than I meant to.
"So I'm going to die?" she asked in an alarmed voice.
Then I felt even crappier. Pretty darn crappy.
All's well that ends well - I gave her some extra dessert and put her to bed. But then she was up crying saying that her ankles were hurting. She complains of that several times a week and was up crying in the night about it last night. I have had her tested for signs of Rheumatoid Arthritis (I have it...our family is a bit of an autoimmune nightmare) and she doesn't seem to have that. But still I worry - maybe she somehow got gluten in her food and that is causing joint pain, maybe her body hurts because her BG has been too high lately, maybe maybe maybe! I just don't know. She gets bloody noses all the time too. Is that diabetes related? I don't know! She had three today and one last night. I worry so much about her.
Maybe I just need to go to bed and get some sleep and I'll feel better in the morning.
Keystone First Denial - Fighting Back Part 2
6 years ago
(((HUGS)))
ReplyDeleteOh sweet Amanda...I feel your pain. First off, I don't think the bloody nose thing is related to D...but, Joe does get them all the time too. hmmm.
I can relate to melt-downs...and blood sugars outta whack...and trying to parent, with D in the mix. So hard to parent...knowing that blood sugars are part of the problem; or certainly they are something that is not helping our 'little angels' behave to the best of their capability. I.HAVE.BEEN.THERE so many times over the last 3 1/2 years I cannot even tell you.
And yes, RIP YOUR HEART OUT...and maybe throw it in a blender too for good measure on the comment by Emma not wanting to have D anymore. UGH.
LOVE TO YOU
Oh I am so sorry this happened. It's all so hard. I feel your pain at it all and I share in your concerns about your daughter. We have all been there at one time or another. My thoughts and my prayers are with you. Tomorrow is a new day.
ReplyDeleteMy B had a lot of leg and ankel/foot pain at night too. He was so tall though I always figured growing pains. But it was enough that every time I went to the endo I would bring it up, and i was assured over and over it wasn't becuase of D. He is 8 now and hasn't woken up for over a year now.
ReplyDeleteI'm sorry it has been so rough lately. I've been there friend. I like what Penny said...tomorrow is a new day! All is well. :)
Sorry you've had a rough time of it lately. We too just had an episode where Elise threw a total fit and when we checked her BG it was 415. Well, duh, no wonder she was screaming. I hate that we all have to deal with stuff like this. Hoping things are looking up for you on this new day!
ReplyDeleteOh wow! Part of me is grateful Charlotte is still too young to understand some of the scarier parts of diabetes. But, I don't think that a little bit of "reality" is going to hurt Emma, especially since self-bolusing really could be life-threatening ! If she knows how important it is not to touch her pump, hopefully she won't.
ReplyDeleteAlso, I had bloody noses a lot as a kid, and I was had been told (or at least thought) it was somehow related to seasonal allergies. ??
Amanda-
ReplyDeleteMy name is Carrie. I saw your comment on my blog this afternoon (you found me on Dingbat). Thank you for your kind, sincere words of encouragement as well as your offer to answer questions, etc.
Of course, I'm going to take you up on that offer and I'd like to ask you a few questions right off the bat.
Our doctor has fast tracked us into a pump and we should have a trial run with the omni pod this weekend. So I'm curious to know how you selected which kind of pump for your daughter? Also, do you have a CGM? If so how do you like it? Lastly, will I EVER sleep at night without worrying about him dropping low???
Thanks for offering to help out a complete stranger. As you can imagine, I am desperately reaching out to anyone for help and advice.
Thanks again,
Carrie
carrie.carson@hotmail.com
(((HUGS))) to you Amanda,
ReplyDeleteMiss E just had a similar moment where she told me she didn't want diabetes anymore, she sat on our kitchen floor crying and asking me if we could make her 'regular' like her mommy and daddy :(
It took every ounce of strength I had to not cry with her, it is soooooo hard and I am so sorry that you went through that. I wish I could just take the diabetes out of our little angels. It is so much for them to go through at such a young age.
Oh, my dear friend, what a hard week for you. There must be some range of emotional reactions that we all have to go through. Perhaps on some level saying you don't want it and feeling so sad is some kind of rite of passage our children need to go through to reach the other side and find a level of acceptance. As a parent we just want to take away the pain and our beautiful children are having to be grown up far too early in dealing with this. Could we maybe all get together and establish a kind of city of Type 1 (Pancreacity?) where everybody knows about Type 1? All cafes have carbs levels on the menu and all parents of children with Type 1 get free massages each week. Sorry! It's late here and I am rambling.
ReplyDeleteYou are not alone. Keep blogging and realise how many people are rooting for you.
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ReplyDeleteThis sound really rough. I hope your week gets better!
There have been times where I felt like Emma too, but they always pass. I think it was important that you express just how dangerous the self-bolusing could be! It may be scary, but it's important for her to know.
I'm a little late to chime in here. I'm just catching up on blog reading now. Just want to send you some (((hugs)))! I hope today was a better day!!
ReplyDeleteAmanda - I am just catching up and a bit late to chime in too - but I just want you to know I am sending you some big hugs! Sounds like a rotten day..and I know what those are like first hand. There are so many variables with this crazy disease it is hard not to worry about every single thing that seems even slightly off with your child. Remember that you do a great job & like Jules said..you have lots of fans rooting for you!
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