It went… Angelina just got home and she said it was great! She likes her teacher, which is a blessing. And even better – NO HOMEWORK! Not even paperwork for Mom to fill out.
My first day of school on the other hand… Well, it wasn’t so great. It wasn’t BAD, per se. But not great.
We’ll start out with the fact that there were MAJOR staff changes from last year. The only person that’s the same is the district nurse, who isn’t even at the school unless there’s a problem. She oversees the medically needy kids at 6 different schools in our district and is in charge of making sure the proper plans and supports are in place and helping with training or issues for the school site health techs (which may or may not be actual nurses). We have a new principal, new office manager and a new…aide. She doesn’t even get an actual full-time health tech this year apparently. The person that was assigned to the school is a para who is there to help with 2 disabled kids in AM kindergarten. Oh, and if Ang happens to come into the office and her blood sugar is out of range, she’s supposed to get a call to come to the office to help. #$%^&* I was not happy about this when I found out yesterday, but I try to be open minded, and really, Ang is an expert at checking her own blood sugar. And if the office staff are also trained to help her/supervise (they weren’t last year) then that means more eyes on her, right? Except that when there isn’t one full-time person assigned to the task of caring for someone with medical issues that person has a greater likelihood of slipping through the cracks behind choruses of “I thought you were taking care of it.” “No, I am pretty sure you were supposed to take care of it.” All ending, of course, with her not getting the timely treatment she needs because the left hand doesn’t know what the right hand is doing. Of course, that’s worst case scenario, but I think any D-Mama must be lying if she said she didn’t ever think about things like that happening.
So, that stress I knew about yesterday. The principal seemed very nice and very informed. She said she had t1 students at her previous school and seemed to know quite a lot for someone who wouldn’t have been involved with day to day care. Unfortunately she won’t be the person involved with Angelina’s day to day care either. The new office manager seems very stressed out, but enthusiastic, so I think she will be an ally. I can’t imagine it’s easy being the new person in charge of everything on the first day of school.
So, the aide. Well, I was hoping for the best because when I spoke with DN (district nurse) yesterday she said that even though the new aide wasn’t going to be in the clinic all day, that she would be available to come if Ang came in. She told me that the aide had been assisting another t1 student (with a pump) at a different school for the past few years, and that student had graduated to middle school this year, which is why she was placed at our school. So, that sounded promising. Or at least not terrible, since we lost the fabulous nurse we had last year.
And then, this morning when I went in to have a brief meeting with everyone the new aide was not there and I was informed that she doesn’t start until 8:30. School starts at 8:35, Ang gets there around 8:20 if she rides the bus. I tell myself it’s not a big deal, because she will have just eaten breakfast before leaving the house and I would know what her BG is and she normally wouldn’t get checked between breakfast and lunch anyway unless she didn’t feel good. So, I was asked to come back at lunch to teach them how to use Ang’s pump. This is something different because last year after diagnosis she was still on shots. She just started pumping in mid-July. The DN and I agreed to meet at the school at 11:45, since Ang’s lunch is at 12 and that would give us a few minutes to get introductions out of the way and things settled before Ang came in for her check. Well… I get there at 11:45 and neither the DN or the aide are in the office. So I stand around waiting and writing some info in the packet of papers that I brought with me about how to use the pump. A lady walks in the office and sees that one of the papers has a glucose meter picture on it. She asks if I’m there about diabetes. I said I was a parent and that yes, my daughter had diabetes. I asked if she was the new health tech. She said no, but that the aide had sent her to find out what time she was supposed to be in the office for Angelina’s lunch, because she didn’t know what time her lunch was. All I can say is that I’m glad it wasn’t last year, because her lunch was at 11:40 and she would have missed it. Did I mention that AM Kindergarten is in session until 11:55?
Anyway, a few minutes later this lady walks into the office eating something that smelled like nuts out of a ziploc baggie, kind of looks at me and says, “Are you the mom of the diabetic?” I said “I’m Angelina’s mom.” She said “Oh, hi, I’m L. I’m going to be the one checking your daughter’s blood sugars.” Right off the bat this sends off TONS of red flags. She then goes on to tell me she’s SO hungry because she didn’t get a break and didn’t get to eat breakfast and that was what she was eating. I asked if it had nuts in it and she said it’s cereal. I said “Oh, that’s good. It smelled like nuts and Angelina has a severe nut allergy.” She then decided that she needed her water and she said she was going back to the classroom since no one else was there yet. While she was gone the nurse finally showed up and heads into the clinic (which is really just a little 10X10 room with a bunch of filing cabinets, a counter and some cupboards and a sick bed in it). I asked about the aide because the name she had given me was different than what the nurse had told me yesterday. She then told me there was a last minute change and this aide was NOT the person who had been overseeing the other kid with diabetes at the other school. Joy. Angelina is a few seconds behind her and starts unpacking her lunch to add up her carbs. Meanwhile, the aide is not back yet and Ang already figured up her carbs and is ready to go.
The aide finally shows up (really she was gone maybe 5 minutes, but in an emergency those 5 minutes can be critical – just goes to show that either the classroom is clear across campus, or she wasn’t in a hurry) and Ang gets out her meter and checks herself and pulls out her pump and starts putting in her carbs, etc. I was just like “Whoa! Hold on! We have to teach them how to use your pump because they are going to have to know how to do it.” Ang was very anxious to go and was getting very frustrated. So, I quickly walked the aide and nurse through the steps to bolus. This was difficult because the aide had left her reading glasses in the classroom and couldn’t see the pump screen. So we convinced ANg that she could unhook and go to lunch and the nurse would return her pump to her when we were done.
While the aide was gone getting her glasses the DN told me that we might be getting a different aide/health tech because they are still moving people around and had some new people enroll in the past 2 days that require an aide. Also, the 2 kids in the kindergarten class were requiring more care than originally thought and the current aide wasn’t able to easily and quickly get to the clinic if Ang came in during the time that AM kindergarten was in session. That’s not even mentioning what would happen if the aide happened to not be in the classroom if Ang needed her.
The aide came back with her glasses and I quickly went over walking her through using the bolus wizard and it made me very glad that I had printed out the cheat sheet instructions that we got for pump training. Then we all went over the dr’s orders and what to give her for lows, etc. The aide didn’t know the difference between fast-acting and slow-acting carbs for low blood sugars which made me super happy that I decided to separate her snacks and label each container with detailed instructions on when/how much to give for certain blood sugar ranges. I had mostly done that for the office staff on the off chance that one of them needed to treat her.
Going over the dr’s orders she didn’t understand when she was supposed to check for ketones, even though the nurse had just explained that it was for blood sugars over 300. Then we talked about how Angelina had hypo unawareness under the 60-80 range and that last year many lows were found just because she came in to check for her end of the day check, but felt fine. Then we got into the end of the day check. School ends at 2:45. Angelina rides the bus and in the afternoon is the last stop, so she is on the bus for an hour. (I mentioned in a previous post how the sub health tech last year neglected to call me for end of the day lows and allowed her to get on the bus without rechecking her a couple times. This is a big reason behind me pushing for a t1 504 plan this year. ) So the nurse told the aide that Angelina should come in about 2:40 to check her BG. The aide just looked at her and said “I leave at 2:30, can she come in at 2:25?” The nurse agreed that was fine.
Of course I interjected with that was fine as long as her BG was fine, but if she was low she needed to be treated adn rechecked. The aide says “Well, I can just recheck her before I leave.” Which, you know, is FIVE minutes later and not nearly enough time for a BG to come up, and that’s if she were even able to have checked and eaten a snack in that 5 minute period. However, coming in to check sooner may or may not work because a lot can change in 45 minutes, as all t1 parents know. So I just said “She can come in at 2:20. If she’s low, treat her and call me and I will come up to get her. I don’t want her to ride the bus if she’s possibly low anyway.” It really sounded like the aide was just going to give her a juice box and leave her there to her own devices. Fortunately we have not experienced it first hand, but I know it’s not uncommon for stubborn lows to not come up right away. Or to come up some and then fall within a short amount of time again – which would likely be right in the middle of her bus ride.
I don’t WANT to have to pick her up every time she has a low. 1. because for some weird reason she likes riding the bus. 2. because in most cases her BG WILL come up and stay up with a 15 g snack, followed by a BG check to ensure she’s over 70 and an additional long-acting snack. But if the aide isn’t going to stick around long enough to make sure that her BG came up and stayed that way I’m more comfortable knowing that someone (Me, in this case.) actually is concerned about what is going on with her and making sure she’s not crashing hardcore.
I feel… cheated. We had a fabulous nurse last year who was only assigned to her school when she was diagnosed with T1 in March. The nurse was actually an RN, since in CA only RN’s can give insulin injections and Angelina was newly diagnosed so not always injecting on her own. Aside from being an RN, the nurse last year also had a dad with t1, and a friend with a pump and she and Angelina shared a love for Hello Kitty. For me, well, she was great about calling me and letting me know what was going on. She also worked at least 8-3 so she was there as long as Angelina was and never said anything about needing to leave if she had to wait a few minutes at the end of the day to treat a low or have me come pick up. (We live across town from the school, it’s about a 10 min drive).
I know it’s not fair to whine about how much this new arrangement sucks compared to last year. But, it sucks. David says I am overreacting and everything will be fine. But I can’t help think that things will be fine… until they’re not. And I’d rather have all the bases covered BEFORE something happens. I don’t want something to happen to Ang before the school/district treat this as seriously as I do. There’s a very good reason that I carry an epi-pen and a glucagon kit just about every where with us – insurance. We’ve never had to use either, thankfully, but that doesn’t mean that I get to stop carrying them just because nothing has happened yet. And I would rather have a plan in place and someone who is willing and able to put aside their own agenda to care for her even when it seems like she is doing okay. Because it would only take ONE time of things NOT being okay.