It started when Lorraine (@Colcalli another awesome lady!), saw I was having questions on Justice’s Spirit pump, and suggested I talk with Sarah (@Sugabetic) as she uses one too. I got a few tweets right away from her. She seemed nice, and so willing to help, as all the DOC does. Just then I got a message “call me”. So I did. A soft spoken, southern bell answered. Her voice had such warmth, and comfort in it. I knew instantly I could talk to her and she would help. She did. We began tweeting here and there, mostly about the Spirit, then diabetes in general, and then random stuff. Then came texting, and messaging random thoughts back and forth. Over a two week period we started to notice how much we had in common. Like to the point it was creepy! I would need a whole new entry to list all of our similarities. I had made a friend. A friend, who lived far away, had diabetes since a child, cared enough to take time out her schedule to help us and who just let me vent, even cry when need be. We made a connection and I can’t explain it.
Aside from the trouble with bubbles, our major issue had become that Justice was running in the upper 200s to low 300s all night. He wouldn’t spike he would just cruise along, even after site changes, corrections, and lower carb dinners. I was at a loss. I remembered something the CDE suggested and then Sarah brought it up. “Sounds to me like he needs some overnight basal testing girl”. So we scheduled a Friday night, filled with diet soda (Justice was shocked), turkey meatballs, and cheese. He was pissed at first at the lack of carbs but settled down and was ready to go. He had hit 85 at 5pm, and that’s when we started. Dinner was at 6pm, bedtime at 9pm. I tucked him in, checked his sugar and he was at a gorgeous 115. Now for basal testing you have to test EVERY hour. My amazing husband decided to let me sleep and do the testing. I woke up twice (mommy alarm), and sat on the couch with my husband. We were both shocked at what we saw. Justice literally went up 100 points from midnight to 3am. With NO carbs in his system. WOW. But this made sense now. This is why he was having so much trouble at night, his basals were not right!
I woke up the next morning and right after I called endo, I texted Sarah. She wasn’t as shocked as I was; I think she kind of expected it? She made some suggestions, and then said call your Endo and see what she thinks. I had already called and left a message for her, so I called again insisting she call me right way. She did. She began to explain to me everything that Sarah did! (That girl needs a degree to be an Endo NOW, she is amazing). Doc made some suggestions and then told me “Now, I know it’s going to be hard Alexis BUT no matter how high he goes DO NOT correct it UNLESS there’s ketones. I need to see what his basals are doing with NO interruption. Let him have a normal dinner, nothing crazy like pasta. Test every 3 hours that’s fine. So we did, and we did.
At 3am I pulled out the meter thinking, ok midnight, and 1:30 were great, is this gonna be super high? The meter counted down, and I was shocked as to what I saw. 67. CRAP. Pulled out some juice, waited 20 minutes rechecked. 63. SHIT. Gave another 7g of juice. 20 minutes later, 53. FUCK! I decided I needed to fully wake him so that he can eat some gummy bears, I did and he did. 20 minutes later he was at 110, then 160. I went to bed. Upon waking at 7am he was at 145. I was thrilled! The fact that he didn’t spike from that low was very unusual. But I knew something was wrong with the low. I called Endo and she made some more changes. But first voiced her concern. “Alexis, he needs smaller basal increments at night, and the pump you have can’t do that. I really want to get him on the Ping.” I explained to her we JUST got Medicaid and the paper work was already started! She was thrilled but still worried if they would approve us or not. UGH. MAJOR SUCKAGE. Apparently because we have a pump Medicaid can say well they don’t need a new one, so we have to prove that this one doesn’t meet his insulin needs. The thing with Justice is he is insulin resistant at times (only way I know how to put it) and has insulin sensitivity at other times. The Ping rep and I talked about this for 30 minutes yesterday, his needs are very unique and they HAVE to approve. We won’t stop till they do.
We tried what endo suggested, and had no lows but 3 highs. Damn. .1 is too much for him at certains to go up by or down by, and there’s no in between with the spirit. Endo had mentioned playing around with the times and numbers alternating them to see what would work best. Of course if I needed her she said to call right away. But I felt confident. Not sure why, but I did.
I always like to bounce ideas off of people, it just helps me to make sense of what I’m doing if I can say it out loud to someone else. With some help from my girl Sarah, I moved a number here, and then lowered it here, and then alternated, and then hit OK. Here we go…
Justice went to bed at 100, gave 4 grams of carbs as per Palm. At 12:30 he hit 135, great! But at 3am again he was at 210. I decided NOT to correct and see what happens. He woke up at 7am at 147! This is a HUGE step in the right direction. I have to make an additional tweak to get that 3am down but wow what a difference!! I smiled so big as did my husband. Had we actually fixed something? HOLY SHIT!! I was exhausted as was hubby but we woke up feeling a little relief, and a little more faith in this pump thing than we had the night before. We decided to make a few small adjustments tonight and see how that goes. I can’t wait to do morning and afternoon basal testing, I think it’s going to be amazing!!
Le sigh. Total relief. Well not total, diabetes is a funny fucker who decides to act up when he wants to I know that, but still we made a breakthrough and that feels so good!
After the endless nights of no sleep, the tears, 20 strips recovered in the morning from the night’s fiasco, endless site replacements, and crazy calls to Sarah and endo we made headway.
I know that diabetes is like a never ending storm. It may let up for a bit to let some sunshine in, or decide to give you hell with awful winds, and thunder. Sometimes if you’re lucky you even get to see a rainbow now and then. When you do, hold on to it. Remember it. It may be a while till the next one, and the storm may be rougher the next time through. So strap on your boots, rain jacket and protective gear and get ready. Its gonna be a wet one. I am grateful I have people like Sarah getting wet right alongside me.