Oh, where to begin?
Last we spoke, I detailed our recent trip to Dallas, the highlight of which I gush about here. If you don't want to read the whole post, here's a summary: Trey & I went to see Queen & Adam Lambert in concert, & it was fabulous. Hmmmm. Reading that summary, I have to encourage you to read the whole post if you've the inclination, because the summary does not do the event justice. Even when I type FABULOUS! this way, I feel more words are needed to convey the epic evening.
Anyway, what I didn't tell you is that I desperately needed the night out to listen to Adam & mellow (no drugs were used in the mellowing process) because when we returned home from Dallas, we travelled to Jackson to meet with a trainer & transition Reagan from a MDI diabetic to a pumper. MDI, for those who aren't versed in the language of diabetes, is an individual who receives their insulin via multiple daily injections.
I've known since Reagan's diagnosis that we'd be pumping within the year. Everyone raves about the pump, especially Reagan's doctor (the one in Jackson with the MD behind her name, not me). I've spent the past month or so sending emails, filling out paperwork, making phone calls, & generally completing tasks that no one cares to do, tasks that are made particularly difficult by two young children who don't stop making demands because mom's trying to jump through all the necessary hoops to ensure our pump of choice arrives at the door, along with the supplies necessary to make pump magic happen.
The day before we left for Dallas, after a few months of researching various pumps & weeks of phone conversations about acquiring the one I chose, Reagan's pump was delivered to our house. I'd been telling Reagan it was coming, & that it was for her & it would give her her medicine in lieu of shots. She of course asked me what lieu means.
Needless to say, she was eager to get her hands on the pump.
The pump we went with is made by Animas, a company headquartered in West Chester, Pennsylvania. I'm not going to go into all the details about why I wanted this pump, but at the top of the list of selling points for the Animas pump are, (1) it comes with a remote & (2) it is waterproof.
Pump on the left, remote on the right:
The remote is my new toy. It has many functions, but my favorite is that it allows me to give Reagan a bolus dose of insulin for food she's about to eat without having to touch her, or her pump. This is particularly wonderful in a restaurant, or anytime she's wearing complicated clothing that would have to be lifted for me to access her pump. Or anytime she's behaving like a three-year-old who doesn't want anyone messing with her while she colors.
I realize I just used the word bolus. Here's the thing: Obviously I can't make it far into this post without using a few diabetic-centric terms, so sit down & take notes, because we're going to school for a few minutes. There are two ways insulin is delivered, & this is true for everyone, whether the insulin comes from your pancreas or a pump. A bolus dose is a large amount of insulin that's delivered at once, in a rush, to cover food that is eaten. The second way insulin is delivered is referred to as the basal dosage, which is a constant, tiny ping of insulin your pancreas is always emitting to keep your blood sugar at a steady, healthy level. Reagan's pump, by the way, is called the Animas Ping. It's all the same insulin; it only varies in amount.
The above is important for you to know because what is currently consuming my life is figuring out Reagan's needed basal rates. Today's word of the day is BASAL. I'll use it in a sentence: Before Reagan began pumping insulin, she received a shot of buffered insulin once a day that covered, in theory, her basal insulin needs. The main reasons the pump is superior to a shot of buffered insulin (which is time-released) to meet basal insulin needs are that, (1) the pump mimics the way the pancreas emits insulin, constantly & in small increments & (2) various basal rates can be set during the course of a twenty-four hour day. No one needs the same amount of basal insulin all day long. When Reagan was receiving one shot to cover her basal needs, there was no way to adjust the dosage; six units didn't quite cut it in the morning after breakfast, when her basal needs are at their highest, but was often too much at times while she was sleeping, & she'd dip too low. It was maddening.
If you're not diabetic, or you've never cared for a diabetic, what I am about to say likely means a lot less to you than it does to me, but my greatest joy in life right now is that, because of her pump, I have the ability to adjust Reagan's basal insulin rates. I can cut her basal rate in half, or by any percentage I designate, for an amount of time I specify. I can shut off the basal dosage completely for a period of time if she's too low & not rising. I am like a kid in a basal insulin candy store. I currently have four rates set during the course of a twenty-four hour day, but I tweak the amounts daily. At six in the morning, her pump begins to give her more basal insulin in preparation for the massive natural rise she has in the morning. At four in the afternoon, & again at eight o'clock at night, the basal rate is lowered incrementally to make sure she remains high enough while she sleeps, & at least in theory, Trey & I sleep as well.
You don't even want to know how crazy my anal-retentative self is about nailing down these basal rates. I think I'm close, but then I get a random high or low, & I have to go back to the drawing board & decide if the off number can be attributed to something other than the basal rate, or if there needs to be another basal adjustment. Once I feel her basal rates are where they need to be, I am going to go work for NASA. No, seriously, I believe that if an army of mothers who've cared for diabetic children could be sent to the Middle East, something miraculous might happen. Presidents & politicians & diplomats are great & all, but gather together a few women whose accomplishments include, "accurately determined my child's basal insulin rates," & sit back & watch; let them tackle our budget woes, because they can work the numbers.
Now that you are asleep more thoroughly understand my excitement over the commencement of pumping insulin, here's how it all went down. A week ago, on Wednesday, July 16, six months to the day of her diagnosis in January of this year, we took Reagan to Jackson. For three hours, we met with a nurse who works for Animas, & we left with Reagan receiving insulin via her pump.
We immediately headed to our favorite outdoor mall in Jackson for a late lunch, where I remotely instructed the pump to deliver the amount of insulin Reagan needed to cover her food.
After eating, we visited the Learning Express toy store, an establishment I forecast will rake in a small fortune over the years as we travel quarterly to visit Reagan's pediatric endocrinologist (in diabetes language, that's a ped endo).
She quickly discovered their Frozen display. I cannot talk about Frozen right now; let's just say that I'd prefer to be figuring out basal insulin rates.
Another number for you: eighty-two. It was eighty-two degrees when we got in the car to drive home. July 16 - - Mississippi - - eighty-two degrees - - five-thirty in the afternoon. It was a day for miracles.
Since we returned home, things have gone well. Pump, pump, pump. It's always pumping (much like a pancreas). Saturday, we went to my Aunt Donna & Uncle Bryan's house for a gathering-o-cousins. The afternoon's key event was a drama featuring Reagan, her cousin Will, & his new motorized jeep. It went a little something like this (feel free to insert your own captions):
Henry saw no jeep action. Donna & Bryan recently added a luxurious pool room adjacent their pool where Jessica & I want to live we all lounged.
Henry in a glass case of emotion:
Annnd the inevitable attempts to capture a shot of two three-year-olds & two infants with their great-grandfather:
Henry is DONE:
Miss Maisie was uncharacteristically gleeful about her time in the water:
Henry, per his usual, was fine as long as he was eating something:
Before I close I need to introduce my parents older &/or technologically unsavvy readers to yet another new term: hashtag. Did you think I typed the title of this post in haste? I did not. If you've not yet been introduced to her, this is the current Miss Idaho, Sierra Sandison:
Google her name & you can take your pick of news articles covering her recent decision to wear her insulin pump on her bikini while competing in a beauty pageant scholarship competition. She was encouraged to post a picture to her social media accounts, & other pumpers began to post pics of their pumps, tagging them with the hashtag #showmeyourpump. A hashtag is used as a search tool on Twitter & other social media. It's a means by which related posts can be easily located. If you're on Twitter, search #showmeyourpump. I did. It's encouraging to a mom who's recently hooked her three-year-old up to the device that will serve as her pancreas for the foreseeable future.
I have to point out that in the background of diabetic Miss Idaho's infamous photo is a sign advertising Idaho potatoes. Anyone else think this is hilarious? Anyone?
#potatoeshavetonsofcarbs
I feel a series of thank-yous are now in order. Thank you, Sierra Sandison, for the choice you made that has inspired pumpers worldwide. While wearing a bikini in a pageant (or anywhere, for that matter) is not something I will ever encourage Reagan to do, I do want her to forge ahead with life with no qualms about herself or the pump she wears, so thank you, Miss Sandison, for doing just that, no doubt giving a much needed boost of confidence to little pumping girls everywhere.
Thank you to the Animas employees. I've had only positive experiences with this company's employees. I currently am in contact with a nurse who will follow-up with us for six weeks as we adjust to pumping. Her name is Lisa. I'll likely never meet her, but I like her as she's as determined as I am to discover Reagan's needed insulin regimen.
Thank you to the engineers who developed & continue to perfect the technology that makes this pump possible. It is an amazing little gadget. The work you do matters a great deal; it not only changes lives, it improves their quality & in many cases, extends them.
Thank you to my family, particularly Reagan, Trey, my mother, & my mother-in-law, who tolerate me while I drag us all through basal hell.
Thank you to the Lord God that my child & I live in a time & place where accessing what is needed to manage diabetes is possible.
Clearly, the pump has temporarily taken over my life. I have not yet watched the final hour of Jack Bauer, which aired a week & a half ago. I don't know how the season ends, so please, don't tell me! I plan to wrap up Jack's day one night later this week. I did finish reading Tatiana & Alexander, the second of three books in the series that's hijacked my emotions this summer. I've inundated you with enough already, so I won't say much about the book. I'm not emotionally ready to anyway; I have so many, many feelings, & while I have downloaded the third & final book, I am not reading it yet. I get in bed at night, & I want to read it because I miss my friends, Tatiana & Alexander, but foreshadowing does not escape me & I know where this third book is headed & it's not a place I can travel while so much mystery surrounds Reagan's basal rates.
I'm holding back on you. Yesterday, Henry stayed with his Grandmama for the better part of the day while Reagan & I pumped all over town. Lunch. Pump. Oil change. Pump. Target. Pump. Chick-fil-A. Pump. Groceries. Pump. The details of that adventure will have to wait though, in part because I am tired, & also because the day involved Frozen paraphernalia that I am not ready to discuss. I know what I can handle, & what I cannot, & right now, I am unprepared to complete Tatiana & Alexander's journey, & I am equally unprepared to discuss Frozen paraphernalia. I bid you farewell. I now return to the labyrinth of calculating basal rates.
AZ
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