Type 1 Diabetes (faux) for a day(s)

We were recently fortunate to get a replacement transmitter for Angelina’s Dexcom system.  The warranty period on the transmitters is six months and we had her first once for just over 8 months (since January) when we decided to swap it out for the new, slimmer version.  The old transmitter had been acting a little weird, but was generally still okay, but since the clock was ticking on the new warranty we decided it was time to swap them out anyway.  That left us with an operable transmitter that’s clock was winding down in the diabetes supply cabinet.   We also recently had a small part of plastic break off of her receiver and lost the usb port cover, which is something that is covered under warranty and scored us a nice new receiver yesterday.  I sent her off to school with the new receiver today and an idea came to me… I’m going to wear her spare devices for the next few days.

So, this morning after she left for school I shot myself with a Dexcom sensor.  I’ve worn a sensor before, shortly after we first got her Dexcom, but it was only for about 36 hours and then she decided that she wanted it back.  Since we temporarily have a full extra system I will be able to wear the Dexcom for at least a full week (I could likely wear it longer, but I do have to send the receiver back to Dexcom since it was a warranty swap to avoid being charged $199).  Since I was hooking up the Dexcom anyway, I decided to also put in a pump site – skin tac, tegaderm and all.  And since we don’t have a spare pump lying around I just taped the tubing to the Dexcom receiver since I have to carry it anyway.  This may seem like still not comparable to what Angelina has to carry with her, but when we are together I generally carry her Dexcom receiver anyway so now I will carry two receivers part of the time, while she carries 1 receiver and a pump part time, and then just the pump while I carry 2 receivers.

It’s not really the same as having Type 1.  Because, yes, I’m attached to bionic parts with tubes and tape, but I don’t have to deal with the ups and downs of blood sugar.  I will still be carb counting, because I do that already for Angelina, but I won’t have to actually bolus myself with insulin since my pancreas still kicks it out pretty well on it’s own.  I will, however, be checking my blood sugar a few times a day since the Dexcom requires at least 1 calibration every 12 hours, but I won’t have to check before every meal or if I wake up in the middle of the night.

Wearing these devices will hopefully give ME a sense of awareness though.  That sense of having things attached to me 24/7 like Angelina does and having to be mindful of that when I change clothes, take a shower, or walk past door knobs to make sure tubing doesn’t get caught and sites yanked out.  I’ve placed both sites on my abdomen because I’m home alone and those were the only places I could reach easily on my own.  I considered wearing the Dexcom on my arm like Angelina does, because it makes it visible.  It makes diabetes visible and it causes her to get a lot of stares and people asking questions – sometimes it’s annoying, but it also starts a conversation about diabetes and every conversation about diabetes raises awareness.  But, alas, I cannot reach the back of my arm on my own to place a sensor.  So, my awareness will have to be here.  In pictures

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Good Things

If you’ve read my previous posts, you know that Angelina started middle school this year.  Middle school has brought with it changes in how her diabetes is treated at school, and how much she is able to do independently.  We struggled last year to fight for her right for independence and honestly, we failed.  As we moved into this school year I resolved to be a better advocate for her at school and to insist on more independence, regardless of what happened last year or what the school nurse’s opinion was.  I also brought David along with me on the first meeting this year, as support, but also to show that we are united in this and even though he was the only man in the room, there’s something about a dad attending this type of meeting that seems to communicate “We mean business”.  (More on the injustices of a patriarchal society later.)

I went into today’s meeting prepared to battle and was pleasantly surprised to find that it wasn’t totally necessary.  Last year we had problems, not so much with the school administrators, but with the district nursing staff who seemed to think they understood our daughter’s needs better than we or her physician do.  Who seemed to think that their interpretation of the doctor’s orders were the only correct ones, despite the fact that the doctor and I discussed the orders and *I* pretty much wrote them (read: told her what I would like them to say) and she added her signature for weight and authenticity.  Yet, I was told that I did not know what the doctor meant, only the nurses did, since they are nurses.  You can understand why I would be apprehensive going into this year’s meeting.

However, the district nurse supervisor has changed.  And not only that, but the district nurse supervisor is also the overseeing nurse for Angelina’s school, which means we have only one district nurse who we have to deal with, instead of two.  And she was AWESOME.  I was nervous, certainly, going into the meeting.  The nurse out both David and I right at ease and shared how she has twin 10 year old sons at home and she understands, from a parental perspective, how difficult kids this age can be.  And then the meeting started.

First off, the assistant principal had another meeting to attend one hour after our meeting began so she was very concerned about time.  Of course, she then proceeded to read last year’s 504 plan line by line rather than just diving into the changes that I had made to this year’s 504 plan and go over the things that were remaining the same.  I will never understand when people say they are short on time and then choose the option of doing things in a way that takes the longest amount of time.  We finally got around to the revised plan and discussed changes.

Something that became immediately apparent is that the current district nurse supervisor was not consulted before the AP made changes.  Instead, she had consulted the nurse we had last year.  And the changes they made were terrible.  The first section essentially said Angelina couldn’t do anything on her own, which is not at all what the doctor’s orders said.  The look on the AP’s face when I said “No. She will test her blood sugar independently. She doesn’t need to go to the nurse or to have the nurse come to her for that.” was priceless.  She sputtered and then went to get Angelina’s diabetes care book from the school nurse (who was not in the meeting) that contained her doctor’s orders.  Clear as day the doctor’s orders say “She is able to be independent with blood glucose testing, CGM trends and alarms.”  Verbatim from the doctor’s orders.  How anyone can get “needs to be supervised” out of that statement, especially after having this argument ad nauseam last year, is beyond me.  And if there was a question, this line from the doctor’s orders should serve as further proof “Check blood glucose with meter brought from home or additional meter left at school. this meter should be allowed to be carried by Angelina.”  It was even more humorous when the AP turned to the DNS and asked her to which the nurse replied “She shouldn’t need supervision for that.  It clearly states in the orders that she may be independent.  I have elementary kids who do this independently, it’s not hard.”  Oh my goodness… where was this nurse last year? I sorely needed her.  And that was that.

The rest of the meeting went rather smoothly.  There were a few tweaks that the AP had made on top of changes that I had made.  Some of them were changed back to my original revisions, others additions were kept.  All in all, the meeting only ran twenty minutes late.  We didn’t sign anything today because of the changes that need to be typed in, and then we will reconvene to sign everything.  I just have to make sure to go over it all with a fine tooth comb because I noticed that some of the sections looked mostly the same but a few words were changed that totally changed the meaning.