So, aside from a few additions to Edie's saga, I've been MIA for a bit. Where have I been? Well, for starters, back to the PICU. And because I always tell my speech students to define terms for their audience, that's the Pediatric Intensive Care Unit. As we continue, you may encounter some other terms & phrases that may be unfamiliar, so I'll provide a link because honestly, I cannot again explain these things. I mean I get that the general population doesn't know what basal insulin is or why ketones are a bad thing, but I just can't go through it all again. To those of you who've listened to a lengthy explanation after asking How's Reagan?, I apologize. There's no short answer, & right now the answer changes from hour to hour.
Mere hours after I posted this manifesto on control, we found ourselves headed back to two of our recent haunts, the ER, & then shortly thereafter, a room in PICU. From the moment we returned home from the original hospital stay, Reagan's numbers were running high. I was told to expect some high readings. So okay, I thought, things are going to be rocky until we get the hang of this. As I read as much as I could online & asked questions of a few individuals I've been in contact with, I realized that I had not been given a proper definition of 'high.' Most diabetics refer to anything that begins with a '2' as a high blood sugar, & many work diligently to keep their highest numbers in the 140-150 range.
Armed with my inaccurate understanding of a 'high' sugar, there were several days when I was happy if I saw numbers beginning with a 2. I knew Reagan needed more insulin, but I didn't feel I understood enough about the two insulins she takes to play around much with her dose. We were told to up her basal insulin by one unit, & her insulin to carb ratio (I:C) was tweaked a bit, but I still saw no real improvement in her numbers. By the time I spoke with an on call endocrinologist who told me, after hearing Reagan's numbers, to up her basal insulin by two units, she had hit nearly 600 a few times. I know that all mothers worry about their kids' health, but let me tell you, nothing will age you faster than seeing 588 pop up on your child's glucose monitor. This was nearly her number when we took her to the hospital in January not realizing she is diabetic. It was a bit demoralizing that, despite the vials of insulin in my possession, I could not keep her sugars under any better control than when we didn't even know she needed insulin.
After we upped the basal insulin significantly, the numbers were a little better, but I was still seeing far too many post-meal spikes that began with numbers like 4 & 5. Not good at all. I began checking her for ketones, & I could not get a clean strip even when I saw a dip in her sugars. I knew we were in trouble . . . & then she threw-up. As soon as the vomit hit the floor I told Trey to put her in his truck & take her to the ER. When the body can't access the sugar & carbs a person eats as an energy source (which it cannot do without sufficient insulin), it begins breaking down the fat & muscle. Basically her body thought it was starving despite her regularly eating. This is why rapid weight loss is a sign of the onset of Type 1. When the body breaks down fat, an acidic waste product (ketones) builds up. Once ketones reach dangerous levels, the blood becomes acidic, which easily throws off the body's pH, hence, the vomiting. Blood work confirmed that she was in DKA (Diabetic Ketoacidosis) & we were sent to a room in PICU, where we settled in & had a long talk with the doctor from about 3am to 4am.
Oh, shoot, well there I go again with the ketones speech. I slipped up after promising you. I guess I feel everyone needs to hear a fantastic explanation of ketones since I was never given one during our first hospital stay, hence, the second hospital stay. By the time I'd read enough on the Internet to know when we needed to test her, & when we were in trouble, well, we were in trouble. They warn you constantly about too much insulin leading to low sugars, but hey, hey guess what medical community? Consistently high sugars are not so great for a three-year-old either, & sometimes mom is right when she insists the three-year-needs more insulin. And breathe.
The second stay was shorter than the first, thankfully. By the next day Reagan's blood work was clean & her IV was removed. Despite the quick trip, she did leave with a few parting gifts:
I quickly realized that while the hospital staff knew exactly how to normalize her blood & her insulin levels via IV, no one was telling me what I needed to do to ensure we didn't end up back in the ER. Everyone had a different idea about how much basal insulin she needs; you know whose idea we're going with at the moment? MINE. I did speak with her endocrinologist on the phone the day after we were released (since she went to med school & all that jazz) & will be emailing her Reagan's numbers periodically. The numbers are improving. Something crazy happens with her sugars between breakfast & lunch everyday. It doesn't matter if she wakes at 80 or 180, she is soaring by noon. This is what caused the DKA. She would fall at night, & then jump before noon, & the amount of insulin I was told to use as her correction factor was just not nearly enough to bring her down so she spent too many days barely dipping near 200. Sugars over 250 put you in danger of ketones, & as they build & build, you become insulin resistant. The amount of insulin I injected her with the day before we ended up back in the hospital would knock a grown man flat.
In other health news, a few days after returning home from PICU, I noticed a patch of weird-ish skin on my hand. I tend to have dry skin & have been known to break out in festive hive-like splotches when I am tired & stressed. I looked at it & looked at it, & late that night I decided I had picked up staph during our hospital stay. I called my mom, & about an hour later my mom & I were headed to an after hours clinic while Trey, my dad, & both of Trey's parents attempted to get Reagan & Henry bedded down for the night. I know, I know. I may have overreacted. I am tired & very, very skittish about Reagan being exposed to anything that might stress her body out, because that will jack her numbers up. I plead my case to the nurse practitioner & she gave me a script for the meds I wanted.
The splotch looks much better. Maybe I didn't pick up staph, but I am going to finish the meds because in the condition I'm in, I need a boost anyway (& because while I rarely take them, when I do take antibiotics, I finish them, & you should too). The main reason I'm sharing this is to explain why I was sitting around in Walgreens at almost midnight. Had I not been waiting for my meds, I would never have seen these gems. I mean I've been dealing with a lot lately, but I did smile & pat myself on the back for never having had a need for these:
If my staph scare isn't enough to demonstrate my mental state, I currently owe Target $39. There could be no greater indicator of the extent to which diabetes has taken over my life than the fact that all I owe to the good people of Target is $39. I'm surprised they haven't called to check on me. You know who did call me? A representative from Blue Cross. They probably think we're trying to bankrupt them. A lady from their Disease Division (lovely, I know) asked me lots & lots of questions about Reagan's time in the hospital, how she's adjusting, etc. She was talking to me like I'm twelve, & I think at one point she may've asked me if I wanted a social worker to pay us a visit. She did seem sincere at times. I tried to be patient with her. I wanted to tell her to hush, that the only thing we need from them is coverage for more of the meter strips we use to check Reagan's sugars because while checking only four times a day is an option for some diabetics, it is not recommended for a three-year-old who was recently hospitalized with DKA & whose insulin needs remain a bit mysterious. I didn't say that because I doubt the chatty ladies working in the Disease Division have much pull.
To relieve some stress, the day after Reagan was released we took the kids to the park, & I have to share these of Henry with you. This was his first time in a swing:
He brings me considerable joy. He is a smiling fool most of the time, & I've never needed a smile more.