As a parent of a Child with Type 1 Diabetes, I must "Learn from Yesterday, Live for Today, HOPE for Tomorrow." ~ Albert Einstein
Wednesday, April 27, 2011
The "Bad" of Yesterday
**Upon reflection about the events of this day, I have edited this post a bit for content. Just wanted to let you know!**
Just a little reminder that this might get a bit 'colorful'...hours might have passed, but some of what happened yesterday is not resolved and still makes my blood boil just thinking about it. Oh, and you might want to grab a snack or better yet a drink 'cause it will pretty long.
Consider yourself warned.....
So, the day actually started around midnight. I had check Bean's BG and was settling into bed...way too late, but whatever! And Bug started coughing. Not your little 'cough, cough' and then roll over. No. This was a deep, seal barking cough. And she kept coughing and coughing and coughing. Now, just so you know, every time Bug gets a cough (a few times in her short 2.75 years of life) she sounds like she has whooping cough but it's just her 'cold cough'...lovely, huh? So, I get her up and we head down to the couch so she can cough and cry and fuss to her heart's content without waking up Bean. So a couple of Yo Gabba Gabbas on demand and some cough syrup (Chestal Honey...love the stuff!) later, Bug's ready to go back to bed.
Check Bean's BG again because I'm in the room anyway and we're still trying to get those overnight numbers figured out and then drag my tired behind to bed...way, way too late since it's already morning!
Another BG check at 3:40AM, then the alarm goes off to get me up at 6. I had my annual (yipee) scheduled for Monday, but it had been rescheduled to Tuesday at 7:10 on Monday morning. So, this is day two of me having to get up and get ready early in the freakin morning. I don't particularly care for mornings...no, make that I hate mornings and avoid them at all costs and only get up when I absolutely have to. And if there's no real reason to 'get ready' then I don't...why waste the sleep?!
The phone rings at 7:15....annual rescheduled again! So, the day is starting off with me having way too little sleep, even less than the 'normal' way too little, and getting up and getting ready when I didn't have to. Sucks!
Get Bean up...challenging because she's 'soooo tiiirrrred.' Well, no sh*t, me too...
Get Bug up...poor thing looks like she's been run over. She coughed so hard in the night that she looks like she has red freckles from the burst capillaries.
Bean to school; Bug to Grandpa's; me to the store to get more Chestal Honey so Grandpa would have it for the day. Bug was scheduled to hang out with Grandpa for my morning appt, Bean's lunchtime appt, and my afternoon appt.Cough syrup, check. Syringe to put it in so Bug can take it...um, not so much. The Pharmacy wasn't open yet and there weren't any med-dispensing devices anywhere in the store. So I went to the Customer Service desk to see if someone could get into the Pharmacy to get me one of their awesome syringe thingies. As I'm waiting behing this lovely elderly couple to figure out how to work the buttons on the 'slide your card and pay' machine, I see the Pharmacist leave the Pharmacy with his coffee cup. Not wanting to chase him down like a crazy person, I figured this was a good sign that someone was at least in there working so it shouldn't be a big deal to get something even if they weren't technically open yet. I explained to the gal behind the Customer Service desk what I needed and she said that no one had keys to get into the Pharmacy. I mentioned seeing the Pharmacist and her reply was "I don't even know his name so it's not like I could even page him." Seriously? This is the person they pick to work behind the Customer Service desk? At this point I'm loosing my 'nice voice.' I ask to speak to a manager and she pretty much rolls her eyes and calls one. I'm waiting....and waiting. By this time the Pharmacist is walking back with his coffee cup now full of steamy goodness (jealous because I haven't gotten my latte yet) and the oh-so-helpful customer service bitch says, "There he is if you want to just go ask him yourself." So I did (trying to use my nice voice again) and he happily grabbed me a syringe and I went to pay for the cough syrup. I decided to exit through the 'other' doors so as to not give into the temptation of making a really snarky comment to the customer service gal.
So, cough syrup is dropped off at Grandpa's and I decide to get my latte and head home for a hour of quiet and maybe the hopes of dozing off a little to make up for my lack of sleep before I need to pick Bean up for her appointment. Stupid me checks email when I get home and see that the Auction Committee needs some items picked up for the auction on Saturday and I think, 'hey, I could do that between my afternoon appointment and picking up Bean from Drama Club and Bug from Grandpa's.' I text my friend to get the info needed and find out that she's at the school and I need to get forms/receipts for the donors. So since I have to pick up Bean for her appointment anyway and I'm obviously not going to be getting any dozing time, I go ahead and head over to the school a bit early.
I get there and I see the nurse through the window of the secretary's office. Kinda surprised to see her since she's been gone for extended periods throughout the year. And her position isn't full time or even half time; she's there for a couple of hours Tuesdays and Thursdays. When she was on a couple of long absences because of family reasons, the sub-nurse chose to be there for the required amount of hours just on Mondays. So needless to say I don't see her as the primary person responsible for Bean since it's usually a TA or the Secretary that oversees everything.
Anyway, Nurse says she was just having Secretary pull my phone number so she could call me. She wanted to talk about the '55 before lunch' issue we had had on Wednesday the 14th. This was a day Nurse wouldn't normally be there anyway, but it was during the time she was out for whatever reason and she was just learning about it today. I mentioned it here, but to save you from scrolling through that lengthy, BG loggy post, here's the jist: Bean checks her BG before recess. If she's below 120, she's to have her designated Goldfish snack to boost her until lunch. Her before recess number that day was 124. I have talked with TA and Secretary many times about having her go ahead and eat all or at least half of the Goldfish if she's close to 120 and even as high as 140 since there have been recessed when Bean has dropped a good 80 points. That didn't happen. Bean tested for lunch, 40 minutes later and was at 55. Now, according to the instructions taped nicely inside her PDM (combo meter and pod controller) case (at the school's request so there was information with Bean at all times and no one would have to looking through the hundreds of forms in the nurse's office) it says, "Anytime below 70, give apple juice. Test in 15 mins to make sure she's going up. Always call me or Ubergeek, with our phone numbers listed." What did they do? They let her do her lunch bolus and sent her to back to class to eat. Great, huh? Not so much!!
I moved into the nurse's office to continue the conversation. I told her that my biggest problem was the fact that Bean's 55 was basically ignored. (I was not using my nice voice at all and was trying really, really hard to not go full on bitch yet.) I told her that it was plainly stated on the info sheet with Bean's PDM what was to happen (juice, retest, call) and that none, NONE of that had happened. Instead, Bean was given insulin, INSULIN at 55 and sent to eat her lunch. They trusted low 7 year old to go directly back to her class and figure out on her own that she should eat her applesauce first because she was low and not to decided to take a side trip to the bathroom where she could have passed out! After a bit more discussion, Nurse wanted to take Bean's PDM around and show everyone individually and remind them of how lows should be handled. I reminded her that we would be leaving for an appointment soon and that I needed to go talk with the Auction Committee before we left.
So, off I go, down the hall to where my friends (the Auction Committee) are working on things. I walk in, close the door behind me and tell them I need just a minute. I then let out a probably louder than it should have been, but who really cared at that point, "F*CKING HELL!!!" Not a phrase I would usually utter, but I was beyond the point of being able to express myself in a respectable manner!! Neither one were offended as one of them uses FFS often and the other isn't shy with f-bomb either...they were, however, both immediately concerned and wanted to know what was going on. It took me a minute, but through the inevitable tears that come when I get upset, I told them what was going on. They hugged me and one of them was immediately on the phone to start the wheels turning to help 'fix' the problem.
I then went to get Bean from her class and her PDM from Nurse. I felt I needed to touch base with Secretary about the whole '55 issue' since she had already apologized for it the day it happened and Ubergeek had emailed her about it. That conversation didn't go nearly as well as I would have liked and it left a really bad taste in my mouth. Bean and I left the school and I was doing my best to not scream as we walked out the doors.
Onto the CDE appointment and the 'good' of the day.
As you know, that appointment ran long. We were walking out of that hospital 10 minutes before I needed to be at the other hospital for my afternoon appointment. Not enough time to drive straight there much less get Ubergeek back to work (he had me pick him up instead of meeting us there) and Bean back to school. So I called the office to see if I could push my appointment back or if I needed to reschedule (didn't really want to do that because our schedule is way too busy as it is.) They said I could come in a bit late but that my time would be cut short. Fine with me. Onto driving like a bat out of hell.
Get Ubergeek to work and barely slow the car down for him to get out.
Get Bean to school and just about run her inside. Nurse is still there (miracles never cease) and she asks me if I have a minute to which I reply, no not really. She then proceeds to start a conversation with me. (Um, HELLO? Did you hear me?) She told me she had plans to meet with everyone in ones or twos to go over Bean's care (which really confuses me because even though she's 'the nurse' she's really not the one involved in Bean's care from day to day) and that she wanted me to pick another adult in the building for a backup person for Bean to go to when the TA and Secretary were busy with other students. Um, WHAT THE F-idy F F? This honestly made me take a step back because we had to fight tooth and nail at the beginning of the year for anyone other than the nurse to even watch Bean test and dose. Now she wants me to just pick some random adult to supervise her when TA and Secretary are too busy with other things? EXCUSE ME? Too busy to make sure my child gets the life saving care she needs, can't survive without? They now want Bean to wander the halls trying to locate this other adult and hope they are able to be found and are available to help her. I don't want to imagine the horrible outcome that could have happened on the day she was 55!!! So, to this ridiculous suggestion I replied, well if that's the case, then let's just have her start testing and dosing in the classroom. That way she doesn't have to be a distraction to the office staff. (That last part I made sure to say a bit louder as we were standing in front of Secretary's window. Yeah, I can be immature like that sometimes!) Nurse said we'd have to check with Teacher first and I reminded her that Teacher already had experience with D kids from coaching and that it was for that reason Bean was in his class in the first place. She said she'd check with him. Lovely.
So, out the door I go. Drive like a bat out of hell to get to my appointment. The one where I'm supposed to be getting help dealing with all of the crap that's going on in my life right now; the appointment that had to be made to go along with the prescription that I've been taking (that's helping, btw, and I'm grateful for that).
Thankfully there were no coppers out where I was because I would have gotten a ticket for sure! I arrived 5 minutes late to my pushed back half an hour appointment. One nice thing was that it wasn't as expensive as it 'should have been' so at least I saved some money!!
After my appointment I head out to round up auction donations and try to enjoy the 'aloneness' for a little bit. Ubergeek calls me and tells me he'll be working late to make up some time and that he has to go to the school to finish up the project he's overseeing. Great, another long-ass day with no help in the evening. It's been like that for a week now and it's getting old. Hopefully next week will bring him home at a more normal time because unless those meds are increased, it's not going to be pretty around here.
Girls eat dinner, go to bed early and I sit on the couch and get lost in the TV for a while. Ubergeek gets home just as I'm deciding to drag my tired self to bed a little early and of course we have to go over the events of the day. I couldn't go into a lot of details about the shit storm at the school with Bean in the car, so I had to go through it all with him. Enter more colorful language and more upset tears.
It dumbfounds me that during the last weeks of school, I am having conversations about issues with Nurse that I thought had been under control all year. (She will be retiring so I am looking forward to having a fresh start next school year.)
I am pissed off that a school that we love so much, spend countless hours helping out, would treat my daughter like they do sometimes. Sure, most days they are 'on top of it' but the one day they totally suck at it is the only day she's ever gone low at school. Ubergeek and I totally agree that if it weren't for the awesome program and the fact that Bean LOVES her school, we'd be gone. And it wouldn't just suck for Bean that we'd be gone, it would leave a huge hole in the their volunteer force because Ubergeek and I do way above and beyond what a lot of other parents do.
I cried yesterday about D and I haven't done that in a while. It's so totally unfair and it so totally sucks that something like a stupid pancreas can make such an enormous impact on our lives. It beats us up, drags us down, kicks us while we're there, and leaves us to try to pick up the pieces...taking people we thought were there to support us with it.
D can SUCK IT!!
Oh, hey....in case you forgot...Bean's A1C was 8.8 yesterday...down a whole point! WOO-FRICKIN-HOO!!! Just had to leave you with a 'good' after dumping that huge pile of crap on your computer!!! ;)
Thanks for letting me vent....I know you all 'get it' and for that I am forever thankful to have found you!!