The craziness of managing Diabetes in a child. An all and only about Type 1 Diabetes x's two in our house.
I'm not the depressed, obsessed, controlling, nagging, angry, and complaining person that this blog reflects. This blog is where I leave my daily Diabetes frustrations and move on. I do hope I can help others like us by voicing these feelings and being honest, helping you know you are not alone!
Its been 27 hours since Maddison left for camp. I must say, I didnt even cry when she boarded the bus to leave! My heart however, was pounding and I had a terrible lump in my throat. I didn't want her to see me cry, so I was proud of myself that I didn't! Maddison must have hugged me ten times before she left, nice looonnnggggg hugs, which was kinda surprising because Maddison isnt really much of an affectionate child. I know she started to feel some butterflies in her tummy when it actually came time to say goodbye.....but, she was still all smiles. I however, had a fake smile plastered on my face and HORNETS in MY tummy. Initially I had envisioned that I would have a tearful breakdown as she boarded the bus, but knowing Maddi had her long time D buddy with her, really soothed my anxiety.
Maddi's D buddy is the same age, has the same interests as Maddison and has had Diabetes since she was 3! So, by now she is a very responsible girl, and always watching out for others. D buddy has slept over several times, and is quick to report anything that isnt right. Whether it be someone being mean at the park, or Maddison feeling low, D buddy is right there to lead the way. She is just the second voice that my shy Maddi needs right now! I have no doubt in my mind that Maddison and D buddy will be life-long friends. :)
So, its 27 hours in. I sent Maddi off on that bus not even knowing what her blood sugar was. That was very hard for me to do. I wanted to have her check before she left....but, I let go like I needed to do. Yes, 27 hours in. Its now 8pm and darkness has set in....Im getting a bit looney.
27 hours without knowing how Maddi's sugars did yesterday after arriving at camp. I did reduce her basals a tad before she left, and upped her ratios. But not knowing.....ooohhhhhh this is SO hard. At this point I feel so empty without my Maddison beside me....but I know she is having the best time of her life.
I woke up around 3am this morning with a 411 blood sugar (I forgot to bolus ice cream before bed!) So for quite awhile I just lay in bed wondering what Maddison's blood sugar is doing. I had to remind myself over and over that Maddison catches her lows early (during the day) feels her drops, and rarely sees a number over 200 unless I screwed up somewhere. Im not worried about anything with her numbers during the day, Its just that damn 12am check!! The last check for the night. It terrifies me.
Although I put in writing that I want Maddi's sugar at least 200 for sleeping at camp, I just dont feel like that means anything to them. I mean, they dont know my childs insulin needs. No one does, besides ME.
What if Maddison has to go to bed with insulin working from a prior correction? Will they still get up to check her a couple hours later to see where her sugar is when the correction dose wears off? What if she is 300 at Midnight, and they correct in full, despite the fact that she swam for 2 hours, hiked a mountain and ran around wild all day? I dont know if they would even think to do half corrections or reduce the pump suggestions for highs at that Midnight check! Will they get up to re-check later if she does get a correction at midnight? The answer is, NO. They do a Midnight check, and then it is the "discretion" of the "nurse" whether or not D campers need to be rechecked later in the wee hours of morning. I just dont understand it. It terrifies me. So much can happen between Midnight and the wake up time at 7am. ESPECIALLY when camp keeps them active from sun up to sun down.
And, I know, I know. THOUSANDS of kids make it through these nights at camp every year without any problems. But that doesnt make me feel any better.
27 hours in, and I have NO IDEA how Maddi's numbers have been running. Its the strangest thing, not knowing.
The WHAT IF'S.....What if Maddi is 200 and has been stable for hours up until 12am. What if she crashes right around 1am. Or 2am. Or 3am. Or 5am. Or 6am. ?????????? I just dont understand it. I dont understand the last check at Midnight. What if a site goes bad after midnight? SEVEN hours of not checking with NO insulin going into their body? Am I the only one that thinks a 3am check is EXTREMELY important at camp!!?? What if kids crash after midnight and sit around crazy low for hours before morning? What if they have a seizure in the night? Will any adult wake up? The rest from there....well, I just have to stop myself from thinking about THAT. My husband was angry that I mentioned THAT scenario.....but I was angry that it IS something I think about EVERY SINGLE NIGHT when I put Maddison to bed. And when I wake to check her at Midnight. And when I wake to recheck. And when I go to wake her in the morning. Its something all D parents think about, and it makes me angry that a Midnight check is the last check when activity levels have sky rocketed!
Im also a bit uncomfortable with the fact that only one of the 2 adults in the cabins have experience with Diabetes. One person has Diabetes, but the other has gone through "a week of training." A week of training? What if this person with the "week of training" doesnt understand a full correction at night for a 250 blood sugar is the WRONG CHOICE to make when a child has been crazy active all day? I could drive myself crazy with the "What if's." Really, I could.
27 hours in. I cant imagine what 48 hours will feel like. When night falls (like NOW) I begin to think too much. When Midnight rolls, around I just want to grab the phone and call the camp with some questions. I wish I could, and I dont understand why I can't. I mean, after all, our D children are alive to this day because of our diligence and amazing pancreatic skills. (and juice boxes) (And insulin.) I personally feel the camp should call you after Night 1 and ask for advice in changing basals for sleep time if you request that they do. I tried that request, " and all I got as a response was "Dont worry, we got this." I wanted to shout! "I am the thinking Pancreas, not the pump, and not a text book!" I mean, maybe a snack is better for some kids than a reduced basal. Maybe some kids shouldn't get ANY corrections at night. But hey, who am I? Im just a Mom that lives her second life as a Pancreas I guess. They hold the RN and MD, so I guess they think thats all it takes. I beg to differ....its experience that counts......
Which reminds me of what the "Check in person" for Camp said to me....I was supposed to write down Maddison's ISF on her "care" sheet, so I did. But, the one little __ wasn't big enough. So, under the TINY __ I wrote...
12am 180 3am 240 6am 200 8am 240 7pm 180
Do you know what she said to me!? She told me she needs to know Maddisons correction factor, not 5 of them. She then proceeded to tell me "YOU NEED TO BE SMARTER THAN THE PUMP AND HAVE ONE ISF, not 5."
WTF? My response to her was that "I am smarter than the pump, thats why Maddison has 5 different ISF's programmed into it!"
SHEESH. She then told me those numbers were "blood sugar targets", not a correction factor. OH MY GOOOOOODDDDDD!!! Lets just say my husband had to finish the conversation with her at that point!! He knew to jump in before I freaked out :)