She seemed fine the next day, increased and kept down small portions of food. She seemed well enough even the following day to go to a birthday party she'd been looking forward to for weeks. I shouldn't have caved to that, though, because she fell right back into the vomiting that evening. (And I feel horrible for exposing everyone to it but I really thought she was over it!) Because she hadn't had high sugar levels or fever and was doing so well, I didn't even think to check her for ketones (MISTAKE) until Monday. She hadn't been drinking as much as I'd wanted her to, but she was drinking, so I just didn't think about it. Monday morning our middle daughter was the first to start to upchuck. Then began a rotation in our only bathroom: Ace vomiting, me disinfecting, LilBird vomiting, more disinfecting. Then Rockstar began her morning routine, but stopped to curl up in the armchair and snuggle a lined trash can. It was somewhere between grabbing a wet cloth for one daughter, holding back hair for another, and checking blood-sugars every 2 hours (or less), I realized I needed to check for ketones. When I finally did, I called the clinic to report large ketones in her urine and a rapidly decreasing willingness to eat or even drink. I was also worried about her not having insulin because I wasn't giving insulin for no carb intake, especially with lower range blood-sugars we were struggling to keep up, so she hadn't had any except her regular Lantus dose most of the weekend. My instinct was to lower that, but they told me not to. I think they didn't realize just how difficult it had been to even get her to drink a little bit. I should have lowered the dose anyway, and now I know ... I have to trust my instincts with her. She was down to moderate ketones by the evening, but the low blood sugar was becoming an issue. Despite my best efforts to bribe her with anything sugary, the bottom line was that her 5-year-old self had had enough of the puking, so she was closing the mouth for business!
I spoke with Dr. Jelley the next day when Wave 2 of the bug hit her and she started having diarrhea. I couldn't get a sample to test for urine without it being contaminated, and it frightened me. Unfortunately, he has been of little help to us during this episode because all he told me was that she needed to continue to have insulin, that she needed to have her carbs in liquid form. He didn't want me to make any changes, I presume because essentially all the insulin she was getting was long-acting, no bolus, and even though she's still honeymooning, she needs insulin. The frustrating thing about that is all I suggested was a decrease - not elimination - of that dose. I don't think he fully grasped just how sick she was, nor how stubborn she can be. I really feel that if we'd have decreased that Lantus dose, we could have kept her blood-sugar up and made her thirsty enough to avoid the events of that evening. She never drank enough to urinate again that day, so I couldn't get a ketone level. When her meter showed a 44 that evening and she was lethargic, I begged her to drink anything sweet. She refused. I told her I was going to have to use the Glucagon (emergency) kit. (Thankfully, my friend Sarah had just brought me some small insulin syringes so I could just give her a little bit of it.) I told her if she wouldn't drink anything, we were going to have to go to the hospital where she'd be stuck with lots of needles and have an IV. I even played the It's My Birthday card (because it was). I packed a hospital bag (which made her cry). No dice. I very nervously (though remarkably calm I must say) mixed up the Glucagon (and she reminded me to make sure there was a trash bin nearby in case it made her puke), double-checked my Pink Panther (diabetes) book, drew up the amount for her age, double-checked the book again, begged her again, held her down, swabbed her with alcohol (she was crying by that point but still wouldn't agree to drink instead), and I held my breath as I injected the emergency fluid. She stopped crying, and I almost fainted from the anxiety of what had just happened. She didn't throw-up, but I could see it was working pretty quickly because her energy level bounced back. She still refused to drink. I had a doctor paged at the clinic. While on the phone, Dana listened to me plead with LilBird, even bribe her to drink something. Then it dawned on me that this is her illness, and maybe she needed to know for herself what could and would happen if she continued to control her intake (or lack thereof). Even though she wouldn't admit it, I feel that she wanted to go to the hospital. Before I left with her, I called our family doctor for reassurance. Dana had told me we could wait through the night, but felt we'd just end up there either in the middle of the night (because we'd have another low episode) or first thing the next morning. She told me to be sure to take her Lantus with us and be sure she gets her regular dose on time. Dr. Price said everything I needed to hear as I bawled in her ear. There wasn't a dry eye in the house as she and I left to get her some help. (Jay stayed with the other girls because they had been sick, too, remember.) It was very scary and sad.
After checking in at the Pediatric ER, I did a quick scan of the waiting area and determined there were likely about 15 kids ahead of her, and they didn't appear to be going anywhere fast. Her last sugar (post-Glucagon) had been 151, but nearly an hour had passed since then. As minutes passed, her tummy started hurting again and her face lost color. They closed the Pediatric check-in window. I pulled out the meter and set out to see how she was fairing on the Glucagon. 69 ... just out of range. I remained calm for her even though I was FREAKING OUT inside, and I informed them that she was dropping pretty rapidly. Within a couple of minutes, they called her back. Their meter showed 71. They drew blood, and she was not combative. Uncomfortable and wimpering, she didn't put up a fight like she had the last time her blood was drawn. I think she was just too exhausted. I certainly was. They moved her from triage to The Cinderella Room in the ER where she was hooked up to an IV.
I sat watching her drift in and out of REM sleep, noting her heartbeat would regularly become irregular and slower during those deep sleep cycles. Each time anyone would come in, I'd remind them that she needed the Lantus dose. Nobody - doctors included - seemed to have a clue about the Lantus ... did they need to provide it (NO), should she even have it (YES). As it became closer to 2 hours after her regular dose time, I lost my patience with their ignorance and stepped out of the door and announced to the nearest scrub-wearing person, "I'm going to give her the Lantus injection now." I almost had her pen ready when the ER doctor came in to let me know she was "sure it would be fine" (for me to give that). Not a good start with me. There was talk of catheterizing her for a urine sample, which I could hardly bear the thought of. They brought Gatorade for my sleeping beauty to drink. Ha. Another long hour passed before a guy showed up to move her to the (newish) Children's Hospital wing. He had long hair, tattoos and really cool tennis shoes. Had LilBird been awake for the ride, she'd have enjoyed it, I think. But, he rolled her, bed and all because she was SO asleep by then, through a half-mile of sterile hallways to the bright area that is the Children's Hospital. Her first nurse was an elderly woman, who was very gentle and just the kind of character I needed ... LilBird would have liked her, too. The doctor assigned to her came in. She was a tiny lady with some allergies or a cold. She praised my diabetes note-taking as we went over Bird's history. Once I felt we were settled in, I wandered down the hall in search of coffee. When I returned, a different doctor was standing over her, which startled me. However, when she turned to me, we instantly recognized one another from Day 1 of our Crash Course in surviving diabetes. I was so delighted to see someone who actually has a clue about diabetes I could have kissed her. (I refrained.) Unfortunately, we never saw her again during our stay.
Every 7 o'clock hour brought a different nurse and nurse technicians (and students and residents and doctors). Aside from the first doctor I'd been so happy to see, it wasn't until just hours before being released that we ever met anyone else with a practical knowledge of Type 1 Diabetes. Two people out of about a dozen people involved in her care had a friggin' clue. I had to insist and argue about giving her the Lantus dose the next night too. Each time I'd mention it, I felt like I was speaking a foreign language ... it was as if they thought I was totally insane for insisting that she needed it and that I was perfectly prepared to give it to her. I overheard one of her nurses going over patients at the switching-time and she advised the new nurse, "Her correction ratio is 1 to 20." Her what?? (Her correction RATE is .5 units for every 50 points she's over her target of 100. Her BOLUS ratio is 1 to 20 for breakfast and lunch, 1 to 22 for dinner.) Makes a mama feel confident, huh. I was sooo done with the whole hospital experience by then it was ridiculous. Even that night, LilBird said before drifting off to sleep, "I hope I can go home tomorrow. I am ready to go back home. I miss (the cat)." She'd had enough, too.
Thursday morning brought a resident who reminded me a bit of Tom Sizemore with less charm (if you can imagine, lol). He was actually kind of a jerk, but he got the ball rolling so we could get out of there. It was a long day, and we had an interesting experience with a TU medical student who more or less hung out with us the whole last day. She played Monopoly with LilBird and absorbed everything she could about diabetes from us. Sad that I can't recall her name (or anyone else's from that trip). In anticipation of getting the IV out and eating food, LilBird insisted that Grandma needed to bring her an egg sandwich for lunch. I tried to coordinate the timing of the IV removal with the arrival of her lunch, but Grandma was about 20 minutes later than expected. Coming off a steady 2 g of sugar per hour (which kept her blood-sugar in a beautiful range), that 20 minutes (and no cooperation on LilBird's part to eat anything else), she dropped and we were again fighting a low. I nearly force-fed her some raisins. She'd drank about a half a can of Diet Sprite before I realized the nurse had brought DIET instead of something with sugar in it. (Ergh.) All the fuss over Grandma's Homemade Sandwich and we ended up leaving it - less one tiny bite - in the garbage. Oh well, we got to go home anyway.
It took a few days, but our little monster is back to herself, trying to gain back all 7 of those pounds she'd gained since diagnosis. We did reduce the Lantus dose that day we came home, but even her doses are back as they were before. It was a traumatic experience for all of us, but we survived and we learned a lot. A few days after being home, she actually said to me (after my prompting her to keep her fluids up), "I wish I had a pole all the time, then I'd never have to drink." I reminded her that she cried and screamed like a baby when the sticky stuff from the pole had to come off, and that she'd whined and cried about being restrained from bending or sleeping on the IV arm. "Oh yeah." How quickly they forget.
No comments:
Post a Comment