So, his phone does not get service at the rink. Oh how I wish diabetes management was "black-and-white." It is difficult to explain the complexity of basic diabetes, let alone diabetes management on 'steroids', which is what managing this much activity is like...and add in leaving him for periods of time without a 'trained' person and no phone...well, I have been lurking more than I anticipated.
**********
The car-ride to camp yesterday was much different than the car-ride to camp on Monday.
Monday's drive sounded something like this: "Joe decrease your basal by 40% for 7 hours"... "Joe don't correct for lunch if your number is 140 to 220" ... "call me if your number is over 220 because we should just do a partial correction"... " just call me for all boluses, call me for snack times and lunch time if I am not there."
Yesterday's car ride went down like: "Joe you gotta keep moving when you are in defensive mode. You need the momentum to stop their push" .."Skate with the puck" ... "You, Joe, are an incredible skater and you know mom does not hand out compliments readily" ... "Try some shots from center ice" ... "Joe, your 'behind the net defensive move' is not a 'move'. Don't let yourself get trapped behind the net!"
Do you see the shift from Day 1 to Day 2?
From diabetes to hockey?
We are doing well.
First off, Joe loves Hockey Camp! The schedule consists of ice time from 8:30am until 11:30am. He eats lunch from 11:40 until noon. Then there is classroom time and land drills for the remainder of the day. The camp is fast paced and the activity level is up there. The diabetes management has been similar to how I ended up managing Hockey Tournaments during his past season.
Day 1:
I instructed Joe to decrease his basal by 40% while driving to the camp. I had intended to check his pump when we arrived to camp (I didn't...this is some foreshadowing).
8:30 am: Pre-ice blood sugar was 236, we did nothing
8:50 am: I was watching Joe from the warm room. He stepped off the ice and checked a number. He was 208. He did nothing.
9:10 am: Again, I watched him step off the ice. He was 150. He shot back 14grams of Nerds.
10:20 am: While the ice was being groomed, Joe came off for a snack. He was 53. He drank a juice. I then checked the basal reduction that wasn't a "reduction". Joe had accidentally set the pump to give him 40% more insulin per hour. I could have beat myself up here. I didn't. Joe and I treated the low and never looked back. Joe was really starting to feel the hunger pains from the low. He ate his F-Factor Bar (26 grams of carbs). After realizing our error and knowing he was headed back onto the ice for another hour, we did not bolus for it.
10:50 am: Blood glucose was 170.
11:40 am: As I entered the locker room Joe was programming his pump. His blood sugar was 218 and he was going to eat 88 grams of carbs. I had written a note to only bolus for 80 grams. I did not go over corrections. I told Joe to only do a carb bolus here. I did not want him to correct for the 218. I was concerned he would go low.
1:20 pm: While I was gone, Joe checked a number. He was 102. He took 2 Starbursts.
2:50 pm: Joe checked a number as we pulled out of the parking lot. He was 150.
*From 4pm until 6pm Joe was in the 300s. I find this to happen when we reduce basals and boost aggressively. I did not know how his blood sugars would respond to this particular situation. Tomorrow I will incorporate a post-camp basal increase into our "plan".
Day 2:
I decreased Joe's basal by 40% before pulling out of the driveway.
8:30am: Pre-ice blood sugar was 221 (nice)
9:30am: I am spying from the warm room. Joe steps off the ice for a routine check. 209. He does nothing (which is what I told him to do for that number).
10:20 am: I help Joe with snack. He is 150. I tell him to only bolus for 16 grams of the 26 gram F-Factor bar.
11:40 am: BG 136. Joe boluses for lunch giving himself 8 grams of carb for "free".
1:10 pm: BG was 213. He does nothing as he was going outside for drills.
2:20 pm: After the drills he checked himself. He was 99. He took 8 grams of sugar.
*Per previous experiences and Monday's post Camp highs, I decided to crank up Joe's basal by 50% for the next 3 hours. His blood sugars for the afternoon stayed in the 150s.
What I am learning: This whole letting Joe go out into the world without his Head Auxiliary Pancreas is going to be a "process". There will be mistakes. The numbers will not be perfect. Joe has "basic diabetes" and even "not-so-basic diabetes" down. I know Joe. I know that having to march from the locker rooms to a land-line in the front office to call his mom every time he boluses would take away from his first Hockey Camp experience. Admittedly, I have been lurking in the warm room. I check in with Joe three times daily. For snacks and lunch I am by his side. The "free carbs" with his snacks and lunch depend on where his number is. Also, I want him to not correct for blood sugars that range from 140 to 220, but I want the "negative" correction for blood sugars less than 120, and I wanna only partially correct for blood sugars greater than 220. Yes, I have issues.
We are doing this. Joe is doing this.
A day-in-the-life of trying to be a 'Remote Support Pancreas'. It is a tough job, but it must be done to allow my son to grow.
34 comments:
You are both doing pretty awesome from what I just read. Great job!
Oh you aren't just 'doing it' my friend, you are 'kickin' it'!!!!
I have chills reading about this. You are a Master Pancreater and Joe is one super lucky boy to have you in the driver's seat.
YOU are allowing that sweet nasaly-lipsy boy live life to the absolute fullest, and for that crowds should bow in your presence and cheer loud enough to burst your ear drums.
I love every thing about this. And to think, you are doing all of this while sipping back super-charged, high octane Mommy juice! ;)
LOVE YOU!!!!!
Holy Crap Bat Reyna! Are you on IV caffeine? I don't know how you do it! You never cease to amaze me!
I can't believe D kids, Joe is just amazing. To remember all that and not give up? Your family definitely are Super Heroes! Hope your family is having a great summer. <3 you!
This is good. This all sounds really really good :) You both are doing awesome.
I am so proud of you guys!
You are letting Joe do the thing he LOVES...even though it's hard....even though it's scary....
It sounds like you are ROCKING at this. I was still praying for you both this morning and will continue....
Love that you are doing the negative corrections for bg less than 120. Our pump has that feature...haven't used it yet and quite frankly, forgot about it until this post.
Again...I learn from you! : )
Sooooo tired just reading all that. My brain would be fried having to keep track of all that. You guys are amazing!
You are doing an amazing job Reyna and so is Joe! This is a lot to keep track of. I was just gonna add about cranking up the basals for the 'missed' ones due to lowering, but I see you did in your post. I like the not correcting for 140-220. Have you thought about entering a new target for this Hockey Camp - like 170 instead of his normal target? I'm sure you have. Also, programming in a 'Hockey Basal' that he can quickly get to for camp, as opposed to knowing the 40% decrease. That might avoid the increase error he had. You are an amazing Mama and pancreas, I am sure you have thought about all of this hon. Rock on!
So happy he is having a great time!!! This is the stuff that's so important for living with D...being able to do normal things, even if there is a ton of balancing/correcting/planning involved. I love that you just do what needs to be done and let him have fun. Nicely played Mama Pancreas!!!! :)
You and Joe are doing awesome, Reyna! What an amazing job! Yes, mistakes happen, but we learn from them and keep on going. You two are doing that so well! Just wait...by the time Joe is drafted into the NHL, he'll have all this down to a T! Love you both!
My brain hurts as well. It is one thing thinking what we think, but writing it all down is a completely different animal. It scares me how much we think without even thinking, you know?
You are doing it!! Congratulations on loosening the strings. I know what a huge deal it is!
Holy crap, you are a diabetes MACHINE!!! Loving it. Way to to Team Joe and Reyna!
I. AM. SO. PROUD. OF. YOU. GUYS!
YOU ARE DOING IT! HE'S DOING IT! DREAMS ARE COMING TRUE...HOCKEY CAMP IS HAPPENING!
I want to scream from a mountaintop and tell the world how amazing you are.
KEEP UP THE GREAT WORK!!!!
Way to go - it sounds like things are going amazingly well!
So interesting about the post-camp highs... we had the exact experience last week with Cooper at his day camp. He is on injections, so we didn't reduce basal and actually didn't give any insulin during the day because he was dropping like a bomb. He had to keep having juice at 120 to stay up otherwise he would be at 60 an hour later. Anyways, in the evenings he was in the 200-300s. Weird. Seems like the high activity level and excitement gives some kind of a delayed high.
Hope the rest of the week is fantastic and the focus is on hockey! Too bad about the phone - grrrrrrrrrrrrrrrrrrrr.
I'm not even from Jersey and I am totally fist pumping right now because I am so proud of you guys! FANTASTIC remote pancreating my friend and what an AWESOME job Joe is doing!! :o)
wow! what an inspiration to me.. I am wowed.. We dont pump yet but when we do I hope I have it all together like that..
Great job, Joe!! You're amazing!
Holy shit. Sorry it must be said. You're rockin it sista as is he.
So glad he's enjoying it! I hope one day to be able to let go some....
Sounds pretty darn good! Momma Pancreas is amazingly in the "know" as always! Way to go Joe! Future master pumper thanks to Mom!!!
Gosh, couldn't wait to read how things went...and, I'm impressed you know exactly how many grams of sugar you dispense. I usually just hand over various numbers of Smarties...simply by intuition....Congrats so far! Sounds like the plan is going well.
You are not just "doing this". Nope. You are ROCKING this! I am so proud of you! I am so proud of you both! It's so scary - new things, new experiences, new stuff... and you handle it with such awesomeness! LOVE!
You both ARE DOING IT like rockstars....no more like superstars!! So proud of you and JOE...you have cut a few strings and you both give the rest of us a little more courage to do the same!
You and Joe are ROCKING this thing! WOW! Those are some freaking AWESOME numbers! Only 1 bad low? I am so impressed. And the post-camp basal - I love that he had great numbers yesterday. So happy for you both.
And it SUCKs big time that the phone does not work!
omg those numbers are INSANELY AWESOME for all that activity. WOW.
and i have to say, that when i got to the bottom of your paragraph about what your convo was on the second day? i totally fist-pumped and said F*CK YEAH!
WHOO!!
Bowing in awe at your mad pancreating skillz!!
Love that you guys just rolled with low due to the increase in stead of decrease...an easy mistake that didn't need to be made into a big deal.
Sucks the big one that the phone doesn't work!!
Love the shift in conversation from day one to day two...shows the confidence you both have that you can kick D's a$$ during camp!!
I am so happy for you and so proud of Joe! I get confused with all the numbers; how does little Joe do it?! He is purely awesome! You guys are a great team! Good for you!
my favorite line... "Joe and I treated the low and never looked back"
love it
with d, attitude is everything
just saw this...
A small hand at the school-bus window, waving goodbye. It's a wrenching mom and dad moment when your kid ventures off into the world without you. And the best thing that ever happened to either of you.
Reyna, step by step, you both are thriving...
Your dynamic duo is ROCKIN' Hockey Camp!! I continue to be amazed by your awesomeness Reyna! Really!! Can you come live with me for a while? Pretty please!!!
You 2 are pretty much pros at this by now! Now you can focus on the hockey instead of all the worries about D in the mix (well, obviously that's always a concern, but you know what I mean).
yeah! I am so happy to read that one sentence "we are doing well" YEAH, YEAH, YEAH!!!
Totally awesome...You guys are rockin' it. So glad it's going well!
I am impressed with how often Joe checks his blood sugar on his own, I am having issues with my pre-teen daughter who has been Type I for most of her life, it is just becoming such a bother to her that she is rebelling a little. You and Joe are doing a great job.
You my friend are truly awesome! I love seeing the play by play. So glad Joe is loving camp!
It sounds like he's doing great. Justin at 10 is to flighty to do all of that. I practically have to yell at him through the phone to get him to focus. Its a bit stressful. Glad Joe is having a good time... you are raising one amazing little boy :)
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