Today was our 4 month endo appointment for D-Boy (Jus), and follow up appointment for Ribbon (Syn).
I was actually anxious. Not like A1C anxious, but "PLEASE HELP US." Anxious.
The lows. They're kicking his (our) ass.
I haven't seen a meal spike in 2 weeks. I haven't seen a low come up in appropriate time, in 2 weeks. I haven't seen the back of my eye lids, in 2 weeks.
The gas..well y'all remember we discussed the gas on my last post.
So we went in. Ready as ever.
D-Boy was a nice 140 flat when we left the house, by the time the car pulled in to the parking lot, he was 76. Ok. A boost coming up!
About 20 min elapsed, and we were in the nurses office ready for his bg check (routine) A1C (routine), and weight/height (routine).
Weight? 96 lbs.
Height? 4ft8 (OMG. My baby).
BG? 51! He then said oh yea Dex said double down. Well shit on a motherfuckin stick.
Juice, and granola bar coming up. (60gc).
They then squeezed some more blood to run the A1C.
We headed back to the room to wait for our AMAZING endo.
His pump is off at this time so they could download it mind you, and bg is at 57, 20 minutes later.
UGH! He looks pale, awful. Normally I woulda waited to give him the granola bar but he was starving from the lows. He wanted to just eat so I let him.
In between all this the nurse told me his A1C was 6.3---I didn't even have to register it really. I do know that is NOT from lows, the last 2 weeks is not the norm here, so I patted myself, Dad, and J on the back and kept moving.
I walked outside and told the endo for the first time in 3 years "Help me. I am lost. His bg won't come up. This is day 13!".
She looked at me with such concern and love, "You have his glucagon, or do you need one? Let's do a mini gluc now!".
I had mine, so I did it. We decided on 3 units to help push the bg up.
When I walked in and told him (and Dad) what we were doing he lifted his sleeve and said "Yes!!! Finally! Enough of this!".
30 minutes later he was 80, 87 diagnol up.
Ok. We will take it.
Endo, myself and dad went over logs, numbers, gas issues, basals, ISFs everything....she said "I agree. We need to rule out celiac".
So we will do labs tomorrow, if positive, I am not sure...BUT if negative she may still order a scope to be sure. She said not all labs show up as postive and with these symptoms we need to be really sure.
As she was writing the rx for labs I was looking over the print out from the pump, numbers, lowest, highest, standard deviation, etc. I was really happy with everything.
Then D-Boy said "Is this like a grade?!". I started explaining no good or bad #s, blah blah, when Endo cut me off.
"Grade? NO. Its your body doing all this crazy stuff. NOT you. Unless I find out your eating food without bolusing, we are A ok!". I LOVE HER.
So here we are. Labs tomorrow. Prayers. Deep breathe.
As for Ribbon, all looks good!! No more maturity in any way, so she is ruling out CAH. We will retest once a year to ensure levels stay where they are or come down. Adrenal tests were all normal so it could just be that he has a higher hormone level than other kids. But nothing to worry about.
So now we test and wait.
And in the mean time all basals are down by .05, ICs are largest they have ever been (large meaning waaay less insulin), ISF is higher and she changed his target from 115 to 125 for now as well.
The low from the office ended up rebounding 3 hours later to a 359. Half a correction, and he's now 67, 98 double down.
Its gonna be a looooong night......