Today was Angelina’s quarterly endo appointment. I don’t know why but I always feel over-prepared for her visits. It’s almost as if I’m expecting her endo to suddenly tell us we’re doing everything wrong and change everything. However, every visit I am reminded why we love her. Because she doesn’t.
We were at the office for about an hour. In that time the nurse checked Ang’s blood sugar (238 -high from waffles), her a1c (6.7!!!) and took her pump and meter to download. We did wait a little while for the endo to come in, but she always gives us her full attention and never makes us feel rushed. She always has complimentary things to say and this is the second visit in a row where she pretty much said that we’re doing great and things look great and she doesn’t change a thing. We discussed morning breakfast spike and how I feel that is probably why Angelina’s a1c went up slightly from her last visit in August when it was a 6.5 (lowest ever!).
Because now that she’s back in school and morning’s can be hectic we don’t always get the chance to pre-bolus. And breakfast is pretty much convenience foods that are quick and she can eat on her walk to school, which coincidentally are some of the foods that seem to cause the biggest spikes. Her endo asked if I thought we should look at her breakfast ratio and I said that I had played with it a bit, but then we dealt with lows instead and that it was usually high on mornings when I know we didn’t do all we could to prevent that spike. She turned to me and said “You’re the expert.”
Maybe I’m being narcissistic, but I always love it when the endo tells me I’m the expert. Because, well, I am. I’m not a diabetes expert. I don’t have a medical degree and I probably can’t do or know even half of the endocrinology related things that her endo does, but I am an expert in MY kid and MY kid’s diabetes. The fact that her endo not only recognizes, but also verbalizes that, makes me feel awesome. And because she trusts my judgment, it makes me trust my judgment, and that means that I am more proactive in caring for Angelina’s diabetes and making changes when needed, instead of sitting around wringing my hands wondering what I should do. Or worse- waiting by the phone for the doctor to call to tell me what to do. Don’t get me wrong – there’s nothing wrong with either of those options and if your dr hasn’t given you the instruction or guidance needed to make those types of decisions on your own or you don’t feel comfortable making them, then it’s better and safer not to. There is no right or wrong way. But I have never been one to sit around and wait for someone else to tell me how to handle things that I am capable and willing to handle on my own with occasional guidance.
These appointments provide me with that guidance. They provide me with that feedback that it’s okay to do things my way, and the way I am doing things is having a positive outcome. And knowing that if I don’t know or I’m not comfortable that the endo is there to help, but ultimately this is Angelina’s disease (and mine since I’m handling daily management) and not the doctor’s.
Afterwards Angelina wanted Taco Bell and consumed 146 carbs at 3:45 in the afternoon for a “snack”.
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