Sunday, July 26, 2020

The BG Roller Coaster

A couple days ago I miscalculated an insulin correction.  Well, actually, I calculated it perfectly if he was sitting still and resting but since he was exercising at the time I should have given 1/2 a correction.  N has been going high from 2:30-5 daily for a couple weeks now.  This also coincides with the time of day that he likes to play games on the virtual reality with his arms flailing wildly as he fights with a sword, or he is jumping and crawling around through tunnels hiding from enemies. 

Hubby told N that I react to his Dexcom readings like I am riding a scary rollercoaster.  I don't like rollercoasters and I have a lot of angst when BG is out of range.  I watch the Dexcom numbers obsessively until he is back in range.  Hubby says it looks like I'm hanging onto the rollercoaster bar as we go racing down, down, down into the "red" low zones or leaning back anxiously as we click, click, click up the rise heading for the terrifying top.  That is, in fact, how it feels to me sometimes.  I admit it.  I like to keep things under control.  I like to keep things even and smooth and not just with blood sugar; that is how I like everything in my life to be.  Stable.

So I gave too much insulin while he was exercising.  About an hour later he stopped exercising.  His blood sugar started plummeting.  He was at 290 then five minutes later his reading was 256, double arrows down.  Still high though so nothing to be done but watch and worry.  Within 20 minutes he was under 80 and still had double arrows down.  We gave our 15g carbs and were supposed to wait fifteen minutes.  I was freaking out but N said he still felt fine.  Ten minutes later his number was 52, the Dexcom was alarming that he was much too low, and we gave another 15g carbs.  Ten minutes later N was laying on the couch, white as a ghost, shaking hands, no color in his lips, saying he felt "WEIRD" and another 15g of carbs.  Hubby was keeping him talking, I was on the phone with my sister getting the "pep talk" to give the emergency med if we needed.  I have not had to give the emergency med and I'm not looking forward to it.  

Finally, the double arrows down were replaced with an angled arrow down, and the BG only dropped by a few points.  Now I knew we'd given 45g of carbs with NO INSULIN to cover it so I figured we'd be rising and rising soon.  When he got back above 70 we gave him dinner (about 30 minutes early) and made sure that dinner was mainly protein but still  it included 30 carbs (which is a light-carb dinner at our house).  He'd gotten back above 100 at that point and I debated with Hubby and Sis about covering dinner with insulin or waiting and correcting again or ... 

Things all worked out fine.  We were a team working towards the common goal and everything worked out fine.  I have guilt about it but I know I am human and making mistakes will happen.  I have routines and procedures to minimize error and this time I had skipped a step.  We usually confirm math/doses with another person.  Mostly Hubby & I check each other but sometimes I have N check.  Hubby wasn't home when I gave the correction.   

N's BG did spike back into the 200s but it was back in range about forty minutes after that, although we did decide to cover the dinner carbs we didn't do anything about the 45g of carbs that brought him back up.  We usually give 3 units of insulin to cover 45g of carbs.  I had clearly given TOO MUCH INSULIN.  If you've never seen 1 unit of is a teeny, tiny, amount.  The difference between healthy and safe and sick and low and dangerous is the size of a pea!  

Three hours later was bedtime snack and we were right back on our routine.  He was close to his bedtime BG so we covered snack and moved on with our night.  Hubby did double-check numbers this time.

I couldn't sleep though.  I worried and stewed all night.  Thankfully we have the Dexcom so I could just roll over and look at my phone and know he was fine.  I didn't get out of bed but the worry was there.  He had a lovely, flat, in-range line all night long.  He woke up the next morning bright-eyed and bushy-tailed.  Kids are so resilient.  They don't hold onto things like mom-brains do.

I'm thankful for our support people.  I had hubby and sister and if I things kept going south I was ready to call another T1D mom and I'm sure she would've jumped in her car and been here to help walk us through that emergency glucagon.  I'm glad it didn't come to that.  One day it might. 

Saturday, July 25, 2020

6 Month Check Up

or check in, or appointment...

We had our second virtual meeting with our endocrinologist this week.  We haven't had an "in person" check up since our 30 day meeting back at the end of December, 2019 thanks to Covid19. 

Our first follow-up appointment was 3 months post diagnosis and was a phone call.  This is our 6 months appointment and we did it via zoom.  I know everyone has different experiences but we've felt super positive about everyone in the medical profession we've worked with since our son arrived in the emergency room the night he was diagnosed with type 1 diabetes in diabetic ketoacidosis.  

We checked into our zoom meeting by first filling out a question form and providing our questions and concerns as well as our current ratios and insulin dosing habits.  A nurse showed up in our meeting next and went over our concerns as well as empathizing with our frustration about the "brakes" that have been placed on our desire to start N on insulin pump therapy caused by the corona virus distancing limitations.  She was understanding and helpful.  

We met with our endocrinologist next and he had obviously spoken with the nurse because he listed our concerns first and made sure we got answer to our questions.  We then reviewed my son's CGM data (still loving that Dexcom G6).  We talked through some high-glucose times we have run into lately and then really jumped into how we could get started on that insulin pump.  We settled on doing our first "pump assessment class" in a condensed version right away.  We are now waiting for our insurance pre-authorization team and whatever hoops we need to jump through for them.  

While we had left the hospital in December knowing we would ultimately have our son on an inuslin pump we have had to modify our timeline.  Insurance-wise, he became eligible for the pump at 6 months post-diagnosis on June 9th.  We knew we'd need to start early based on our experience getting the continuous glucose monitor so we started those conversations at our 30 day check but by our 3 month check the novel corona virus had shut down everything in our state and we suspected it would delay things.  After our appointment in May we became concerned that getting insulin pump therapy may be delayed until 2021 but I'm currently still holding out hope that we'll have N on his first insulin pump by his diaversary in December.  

I can't believe I'm already thinking about his 1 year anniversary of diagnosis.  Probably because my friend D posted about her daughter's diaversary on facebook recently.  I remember the first few nights we were home from the hospital and I called the endo nurse every night...yesterday I gave an over-calculated a correction (by a lot) and we dropped into the scary low range.  We even got out the dreaded red-boxed glucagon but it never occurred to me to call the endo nurse.  We've come a long way.  (D, if you are reading this, you were the one I almost called :)).  

So we are on our way to an insulin pump and we've been using our CGM for over four months now.  Our numbers are looking pretty good.  N is out of range 30-40% of the day right now but our endo says that is fine and probably equates to an A1C of 7-8, which he says is fine but I know it is not as good as we want it.  We actually don't know his A1C because we haven't done it since we were in the hospital when it was so bad that no one wanted to tell me what it was; we were told it was over 11 though.

We were supposed to have received an A1C test from home kit a couple weeks before this appointment but it never came and since they hadn't told me it was coming I didn't know to report it when it didn't show up.  I am curious what it will be.  Our Dexom gives us a "best guess" based on our CGM reading and so if it is near that number we are doing okay. 

We scheduled our next appointment for October and it will be virtual again.  We will have to go to the Children's Hospital 2 hours away for the one after that, probably, but we'll see when we get closer.  Our team told us we were doing fine.  We try our best, re-read parts of our pink panther book every couple months and try to make smart, sustainable changes.  

Things are not as scary or difficult as I feared when I got the diagnosis.  We've adjusted to our normal but we still want the best possible outcomes for N so we are fighting for that insulin pump.  That being said, we choose an insulin pump that doesn't yet have an auto connection to our glucose monitor so it won't be able to act like a pancreas on it's own like some of the others.  To remain competitive, I know that technology will come and for our chosen pump it is supposed to come next year but we'll see if that happens.  We didn't chose the pump that had that capability for a variety of reasons but the most significant is that our son is 11 and we want his first experience to be as "low impact" as possible and that meant an easy site insertion and limited fussing with tubes or removing for showers etc.  This is best for his life-style as an 11-year-old boy and in four years he will be eligible to make a change and his life/needs will be different as he enter High School.  

I still feel blessed, looking at him, that he is in our life and he will have a happy and full life.  That maybe wouldn't have been the case just 100 years ago during my grandparent's time.  I am thankful that I live now and that our son's illness is so very manageable. 

Saturday, July 18, 2020

And we're waiting, and we're waiting, and we're waiting

No news on the insulin pump.  I'm bummed.  We heard from the omnipod rep that our insurance is back to approving these prescriptions and she had us contact the pharmacy that we'll need to use to ship supplies to us.  She texted the other day and asked if we have received any supplies and I got my hopes up.  I'd messaged with her at the beginning of the month and she'd told me she had checked our paperwork at Children's and that we were ready for when the update came but...nope.  According to our health insurance there has been no prescription for the insulin pump pdm, pods, or a change in insulin order.  


I'm not surprised but I'm not happy.  I wanted to believe the medical team we met via phone three months ago who said we'd be fine to start on insulin pump therapy but would likely need to take a zoom pump therapy assessment session (they didn't have them yet but they were sure they would be starting them soon since Covid19 had suspended a lot of in-person care).  I wanted to believe the rep from Omnipod that the paperwork was done and we were just waiting for an update to the omnipod.  I wanted to believe just yesterday when I got that text that we should've started receiving supplies by now.  Wanting something is just not enough.  I emailed our endocrinologist and explained all the research and reading we've done and how ready we believe we are.  I texted the rep back and said we've spoken to insurance and the insurance approved pharmacy for shipping.  I, in fact, did talk to several people because I've already found you have to get transferred through several people before you get someone who knows anything about what you are asking about.  

I'm not 100% sure where our hang up is or what I can possibly do to expedite things.  We want insulin pump therapy for our son, he wants it too, we researched and reviewed and tested and chose a pump, we've spoken repeatedly with the insulin pump company, we've tried expressing our desire to our medical team and we've done a lot of WAITING!  

We have about five weeks before we all start back to whatever crazy shenanigans will be our new school year.  Both hubby and I are teachers and both kids are still school-aged.  None of us want to do the thrown-together-emergency-work/teach/learn-from-home again.  Only five weeks and our district hasn't announced exactly how things will be worked out but they have announced some "options".  I do not want to start figuring out a new piece of medical equipment in the midst of all that but I'll do it for N because I believe it is best for his health.  It's just, it would be easier if we could do it now before the **it-storm starts.

I appreciate that we have these great advancements in treatment options for my son.  I'm thankful that he is living day to day pretty much the same as if he didn't have a chronic health condition.  I'm NOT living the same.  I'm harboring my worry and my concern and my advocacy and my frustration and my impatience.  On a positive note, I phoned a friend about my frustrations and she is wonderful.  She told me she reads this blog sometimes though so now I feel weird writing about her.  She's currently waiting and working to get her daughter a G6 so she gets it.  She is jumping all the hoops but the hoops keep moving and so many of the ones you jump don't seem to move you forward or any closer to your goal at all.  What a messed up system.  I'm going to pour myself a glass of wine and I'll raise it to my fellow T1D mom's tonight.  Keep jumping those hoops ladies!

A day in the life!

So what are you doing with your summer vacation?  This seems like a silly question to me, right now, with a global pandemic, and from someone who lives nearby and visits with me regularly.  You know perfectly well what I'm doing...nothing.  So what does nothing look like for a teacher and mom of a son with type 1 diabetes?

4:30 a.m. My son's cat scratches at the bedroom door.  He is an indoor/outdoor cat but we don't let him out at night because he is the WORST FIGHTER EVER!  He has been to the vet so many times for scratches and bites that have gotten infected.  The vet is pretty sure that he likes to test his strength against raccoons and hasn't yet learned that he can't win.  So he has to stay inside form dusk til dawn but at the crack of dawn he starts moaning about trying to get me to open the cat "freedom" doors.  I always give in too because if I don't just get up and open the door he will sit in N's bedroom and bawl.  I then go back to bed.

6:30 a.m. My other son's dog stands outside my bedroom and shakes and shakes his head to make his collar rattle so I will know he needs to go out.  Ugh!!! I got these animals on purpose.  He can't have a dog door because the cat would use it to go outside and brawl so he is stuck inside overnight too and by this time he has to pee.  He is 12 years old so I take pity on him and let him out.  I try to let him out the back door without letting my cat out of my bedroom.  If she makes it out of my bedroom she will get lonely in about 30 minutes and start singing in the kids' hallway but if she stays in my room she will get back in bed with me.  I go back to bed but 9/10 I cannot get back to sleep.

7:20ish a.m.  I give up.  I'm wide awake.  I get up, let the cat out, let the dog out again, and make coffee. Now this is the golden time in my day.  All the other humans in my house are asleep  No one needs anything!  I can sip my coffee and enjoy my solitude.  This is when I can get things done too because there are no interruptions but I can't do anything that would wake the others.  Most days this is sipping coffee, scrolling through facebook, and completing any online professional development work I am doing.  This summer I'm also on a couple of school district planning teams so this is when I work on those tasks too. 

8:30is a.m N wakes up.  BG check, insulin injection, and make his breakfast.  He likes his morning to be spent in his room so he gets his T1D stuff out of the way then heads back to his room to play on his computer or watch netflix and waits for me to bring his breakfast.  We've come to some trial & error timings that work for us and we've found that if he wakes up in range he should get his breakfast 25 minutes after his insulin.  If he wakes at the higher end or above his range he gets his breakfast 45 minutes after insulin.  He eats cereal and bacon every morning (if I don't force him to try something else) so we know what works for this breakfast most of the time. 

9:15 a.m. Breakfast is delivered and no one else will be awake for a while so out to the garage I go to walk on the treadmill for 30 minutes.  Here is what I know about me and exercise...we aren't really compatible.  I give myself full permission to refuse the treadmill any day I want but I have to go out and turn it on and walk on it for 1 minute before I can choose I don't want to do it.  Most days that means I go ahead and walk for 30 minutes.  About once a week I just do the 1 minute. 

10:00-Lunch This time is continuing with work meetings, professional development, setting activities for the student who is still doing online work, or my own personal projects like painting or sewing masks or reading a book.  I'm into the sewing right now so that wins most days.  I have watched some painting tutorials but haven't done a new painting this summer yet.  It feels like I don't really feel like it is summer because I don't know what the plan for fall is going to be.  I'm hoping that after our superintendent gives us the plan I will be able to relax for a couple of weeks before I start back into it. 

After lunch there is a long stretch when there will not be a need for insulin so this is when I might visit my dad/sister at their house or I will go for a walk in the park with my mom.  If I don't get out of the house then this time is spent procrastinating household chores while binge watching netflix.  Sometimes I do laundry or make masks to feel productive.  Today I researched if I want an embroidery machine or not while watching the Mysteries of the Abandoned marathon. 

4:00ish is when I start making dinner.  A thankless dinner that will take between 20-60 minutes to create so that the two humans I built can spend 6 minutes eating it and about that same amount of time telling me they don't really like X,Y, or Z about it.  I don't enjoy cooking.  I've written about this before and I'll write about it again but it isn't getting any more enjoyable for me.  I don't mind the parts of cooking.  Chopping onions, slicing bread, putting rice in the cooker, stirring sauces.  I don't mind any of that but the sum total of making a meal is a loss for me. 

Dinner is between 5 & 6 and comes with insulin and timing issues.  We were eating at the table every night before Covid19 shut us down but now we don't seem to make it to the table more than a couple times a week.  Everyone is so involved in their activities and their schedules are all wonky from being home since mid-March.  Also, there is some sorrow in following our dinner routine since we aren't able to engage in a lot of our other routines of the summer.  Usually we would be discussing our upcoming vacation plans or reliving our recent vacation.  We'd talk about the friends we'd seen or who we had spent time with and what we were planning for tomorrow.  It isn't very interesting to talk about staying home and how we will be doing more of that.  We don't even talk ahead about fall so conversation can be kind of stunted.  The boys are all building a new gaming computer together so lately that has been the conversation but once it is done who knows.

Evening    After dinner is the first time R and I really spend any time together.  He is a very outgoing and busy guy and he can't sit in the house like the rest of us.  He isn't content to play video games all day or watch TV.  He needs to expend some energy so he spends most of the day working outside in the yard, visiting his mom, walking in parks, pokemon hunting in his truck, or running errands.  Now he and I have a couple hours before bedtime to hang out together and we spend it trying to find something that we both want on TV but this is futile.  We should get back to playing cribbage, which we used to do every evening.  I'm going to get out the cribbage board tonight...I've decided. 

8:00    Snack time for N with insulin to get his BG to about 150 so he can go to bed.  He finishes his snack and he and R read a chapter book together.  M grew out of wanting to read with me when he started middle school and N is starting middle school in the fall so I'm not sure how much more time we're going to have for this routine but we are enjoying it while it lasts.  

9:30    N and I are both in bed.  R & M stay up later.  R comes to bed by 11 usually and I hear M do his nightly bedtime routine at about 1 a.m.  

11:30     I naturally wake up at about this time after months of T1D.  N's BG comes down at this time of night from his snack and it can drop by quite a bit so I just peek then am back to sleep (most of the time).  If he doesn't drop below his range between 11:30 & 12 he probably will stay steady through the night.  Before the Dexcom, we were checking BG at 3 a.m. and found him low quite a lot.  Since we've gotten the Dexcom and refined our practice we've found that if he never goes low at 3 a.m.  He goes low between 11:30 & 12 or not at all.  Pretty much.  Who knew.

Not thrilling but this is what we do.  It's funny reading it.  I feel so stressed and worried so much of the time right now that when I read back through this I'm wondering how I spend all my time.  It isn't wasted because I'm using it but it sure doesn't look like I'm using it for productivity.  Ah well.

Wednesday, July 8, 2020

The Waiting Game...Again

So here we are again...waiting.  We are six months post-diagnosis and should currently be eligible for insulin pump therapy which is exciting and we've been waiting for this time but we are currently


Our Children's Hospital was wonderful while we were getting our initial diagnosis about providing us information and training and they have been available as we've progressed in our journey and we've made it clear from the beginning that we are interested in insulin pump therapy as we know it will better keep our son in a healthy range.  At our 3 month appointment, held via phone call, we told our endocrinologist that we wanted insulin pump therapy and wanted to do anything we could to be ready when he reached 6 months which is when our insurance company will cover the insulin pump.  At that time we were told they weren't holding classes but maybe they would have them virtually over the summer. Due to the pandemic we haven't been able to attend any training on insulin pump therapy but we aren't too concerned about our ability to learn what we need in a distance model.  

We have done our own reading and research and yes, we've watched youtube videos and read blogs of others with type 1 diabetes.  We talked to friends who have insulin pump therapy as part of their lives. We  narrowed our scope to two devices, got a trial of each device and ultimately chose the one we felt would be the best "first" insulin pump for our son.  We have been keeping in contact with the insulin pump representative in our area and were made aware that our insurance wasn't covering the existing PDM for the pump until their next update and we've been told that the update occurred and insurance will start allowing coverage of new prescriptions for this insulin pump this week.  Fingers crossed but I'm only hopeful, not really optimistic.  I am pleased because this means we will likely get this done before fall but I'm not holding out hope that we'll have the insulin pump easily or quickly.  It took a lot of calling and sorting to get the approval on our CGM so I'm guessing this will be the same rigmarole.  I'm ready and willing to spend hours on the phone and feel that frustration but I wouldn't mind being spared the experience so fingers crossed.