I can't even describe how I feel. It's a mix of rage, anger, frustration, disappointment and helplessness... but really more rage and anger.
Coming off of Monday's seizure during naptime- I've been just a wee bit anxious about his numbers- especially since I'm not even sure how low he actually got- and am still confused by what happened and why it happened and how it happened and seriously... a BG reading of 105? what? that’s not low? so how? huh? really?
I have yet to "talk" to someone from UK. I was sent basal adjustments through an email which I've made- and which have helped... but honestly I felt better when I was running a temporary basal at 70% (even though it was causing him to run high, appear sick, lethargic and have higher than normal ketone readings).
The MySentry is located in the living room with the outpost in the hallway outside his bedroom. I slept on the couch last night so I could watch it. While I intended to do BG checks every 2 hour - I somehow managed to only check him 3 times between 11:00- 8:00. The CGM data shows him dropping (to below zero) between 1-8. As I told Dr. K today... my only true way of knowing an accurate reading is to check him every hour or two... but I'm not sure how long I can keep that up. I woke up this morning at 6:30 and felt sick to my stomach. I wanted to puke or punch someone when I saw the "silent" alert going off on the MySentry "low predicted." How do I deal with the guilt of him possibly having another seizure while I force my own body to shut down and rest... knowing I need it for my own mental health.
The drama continued this morning. BG reading of 165 upon waking up. Exact carb count (weighing each and every bite of breakfast) a bolus of 11 carbs with a correction factor... 20 min later CGM alarm... 394. 5 min later Saul yelling "low" (though he was really high) because apparently the symptoms feel similar to him and he has a strong desire to eat and drink with both highs and lows... I correct the 394. 5 min later he wants a banana- I bolus. 5 min later he wants an applesauce pack- I bolus. An hour later I witness what I can only describe as "an out of body-mind flip out experience." My guru Ashley has talked to me about some of the behaviors that can happen with both highs and lows and apparently this was my first real witnessing of that. Generally I joke about Saul "hulk-ing" out with highs where he gets angry, mad and fussy... but what I saw today was something similar to the exorcist.... even I was scared. He started sweating profusely, his face got beet red. He started pounding his fists on the table then pounding himself on the face and head. I grabbed him and he swatted and hit me. He threw toys and a fork. I checked his BG it read 160. Bizarre I thought to myself... Maybe this is some crazy temper tantrum... but it came on outta nowhere- he wasn't provoked... he wasn't upset. It was random. I quickly grabbed the control solution and tried calibrating the meter. I checked again- same finger- BG 232. CGM giving no alerts. At this point I picked him up- much like I used to pick up our cat Broni after I’d attempt a bath. I sat him on the couch. I turned on Cars toons. Thank God for STARZ On-Demand and I walked away. He calmed himself down. I went and made lunch. Minutes later its like nothing had ever happened.
At 11:30 lunch was ready. He ate ham, not even 1 strawberry, not even half a Wasa cracker (5 carbs) , cream cheese, 2 grapes. BG 136. As he is eating CGM starts alerting it has him at 176 two arrows down. I decide not to bolus lunch. I mean... I'm scared if he's really dropping and getting ready to nap... don't want a repeat of Mon. He eats. He plays. CGM continues to alert "low predicted." I give him maybe 2 oz of milk... again... no bolus for it.. CGM alerting low... I lay him down in his crib. ----Every time I put him to sleep now I tell him "Saul you yell Mommy if you start feeling how... you yell for me... okay." -----He generally says "tay" then rolls over... waiting for me to leave. He prefers to sleep solo... believe me... I've tried forcing him to sleep with me for my own satisfaction and piece of mind.
Meanwhile... I'm slightly concerned about a problem that has actually been going on for quite some time. As in... I can't even remember the last time it "didn't" happen. It's become so commonplace that at some point it I assumed it was normal- though I know it's not. Saul can not manage to make it through a 2 hour nap without his diaper soaking through clothes and bed sheets. He gets changed every single day and sheets washed nearly every single day. He is changed at least once if not twice in the middle of the night for excessive urination. I realized today... we need to address this. If his BG's were high at night- it would make sense- his kidneys would be working overtime to excrete- but he's not running high... if anything he's running too low. I never check ketones at night because of this... yet he's urinating like he's running high BG's all night. I'm so used to the process of changing diapers, clothes, sheets that I don't even care it happens- I just need answers. The thought of his poor kidneys taking the brunt of diabetes is a bit too much for me right now to handle... so I'll just shelve that to the back of my brain file and move on.
Matter of fact... I'm going to just push all this to the side right now and go do some laundry... or clean my bathtub... or put away toys... or do anything that forces me to not think about diabetes.
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