Can't Win for Losing

 So my son has had his insulin pump for over five months now.  I keep waiting for it to get easier but it really doesn't seem to get easier.  He has his CGM and his insulin pump but they aren't a closed loop so I'm acting as the moderator between them. I guess I thought it would be easier by now.  I thought that once he was on his insulin pump and we got things dialed in that it would be better control than multiple daily injections.  Some days it goes great and other days, not so much.

We've been in a "not so much" slump for a couple weeks now.  My son is almost twelve and he is definitely growing right now.  His favorite shirts are looking a bit small and clothes that were just a bit too big are now fitting him fine.  This is good and exciting and exactly how it should be.  It also seems to be affecting how well the insulin pump is working for him, or not working for him.

So we'd spent about a month with his BG in range about 80% of the time.  That is about the same as we were getting on the multiple daily injections but his quality of life was dramatically improved with the pump.  He could go about his day and I could give correction insulin or cover for an upcoming meal without giving him a shot and he much preferred that.  I was much more likely to give extra insulin as needed too.  His pump lets him have different basal rates throughout the day and we had spent a lot of time adjusting these to be just right.  We never really had a pretty straight line like other people seem to post online.  I know, I know, people post their best moments and show you their best days but I had hoped.  We'd have some portions of the day with good control but each meal still seemed to cause a high for over an hour and sometimes we'd have a stubborn low for no predictable reason.  

For the past several weeks though things have been wonky, wonky, wonky. It is currently 10:20 pm as I'm writing this and I'm up because his BG is at 282.  He ate dinner at 5 pm and his BG was a nice little hill then on the lower side of in-range at 90 for several hours.  Then, an hour before bed and with no additional food, his BG started rising and just kept rising.  I gave 2 units of insulin and waited 30 minutes but the BG kept rising and was so far above range that the insulin on board wasn't going to bring him back under 200 so I gave 2 more units and watched that BG just keep rising.  When I went to check if he was sleeping he said "this pod isn't working, I'm too hot, I just want to get some sleep." So we changed the pod, early. I also gave an injection of 3.5 units to try to get him back into a range where he can sleep.  Now I'm just waiting for something to take affect. That was only fifteen minutes ago but I feel like I've been awake for hours.

His basal insulin rates haven't been keeping a line lately so we've been adjusting them.  This is a slow process.  You watch the data, make smart changes, watch the data some more and then when you think you have it right, your son has to do a fast for several hours so you can see if it is correct.  A correct basal will keep within 20 BG for the time without food so you watch for that fairly even line.  If you get it, GREAT, you move on to the next time of day and do the whole process some more.  If you don't get it, BOO, you have to keep working on it.  We've now increased my son's basal insulin from about 12 units per 24 hours to about 15 units per 24 hours and things are still not right.  A basal rate will seem right for two days and then on the third day he either rises or descends for that period.  

Admittedly, we've already determined that his insulin pods don't work nearly as well on day 3 most of the time and we've gone so far as to change our prescription so that we can change them every 2 days instead.  We haven't fully committed to this and try to make the pod last three days.  1 in 3 pods works fine on day three for him so it still seems worth it to try. Unfortunately it feels like we are watching and tinkering and giving correction insulin and just thinking about T1D all day every day.  Okay, okay, it is just me who is thinking about it all day.  My son is living his life. My partner is living his life.  I'm living as both a human and a pancreas and I'm feeling a bit of fatigue from the situation.  This fatigue I get comes and goes with this T1D. Sometimes I feel like I've got things pretty well in hand and even though it is a lot of mental energy, I feel okay about my role.  Other days I just want to throw in the towel.  Say "eat whatever you want" and ignore the incessant beeping and alarms from the Dexcom. But I don't and I won't and I can't.  Someday this will all be his responsibility. Someday I'll lay awake and night and wonder if he is doing okay, if he's low, if he's high, if he's eating right. So for now, I put on a good face and make the best decisions I can and try to model for him how to stay calm and carry on. 

Well BG is down to 279...not much lower than ten minutes ago...maybe another fifteen minutes.

400 and rising!

 We had our first challenge with our Omnipod Dash this evening.  It was a series of unfortunate events or poor planning or I'm too tired and not thinking straight since I'm waking three times a night to input our son's BG into our new pump...I don't know.

Our son's Dexcom and pod both expired today right around 4 pm.  I knew it was coming because I write it on our calendar since my son is not awesome about telling me when his devices give him alerts.  This also coincides with the time of afternoon that I typically cook dinner.  It was also a time when hubby wasn't home even though with coronavirus he has been working from home for months. I thought I had it all under control and then the universe decided to remind me that nothing is truly in my control.

I lost track of time and missed the expiration of the Dexcom so I had no readings for 30 minutes when I got the alert.  We changed the Dexcom.  We feel like old pros at this by now.  Remove the old, scrub up, wait about ten minutes, pick a new site, disinfect, turn on an amusing youtube video to distract son, press button and move on with the day.  Then I used a finger stick and took a BG, entered it into the pod and gave the bolus for dinner.  Off I went to the kitchen. 

Started making dinner when I remembered I had bolused for Nic's dinner.  With injections we usually waited 30 minutes between giving his bolus and giving his meal but on the dash we give food 15 minutes after a bolus because if we wait he drops below 70 (even from 250 sometimes).  Oops, poor planning or I am unable to think clearly.  I scrapped the idea of him waiting for the main dinner and made an alternate with the same carb count that would be done in time.  I gave him food and deactivated his pod.  Took off the pod (I have since heard from many expert parents that I could/should leave the pod on after deactivating it). I set up the new pod, we picked a site, scrubbed it with alcohol swab, turned on a youtube video, and did pressed start.  Went fine even though it was on his stomach.  

Son is very worried about his stomach.  First he is ticklish there and hates for anyone to touch his stomach and second he has this unfounded fear that something will pierce his internal organs.  No explaining or showing how his body is actually set up have really helped yet.  

Checked the site was set up and pressed go. Set an alarm so I'd remember to check his site after one hour and BG two hours after dinner. Checked the site at one hour and looked fine.  Went about finishing eating my dinner that I'd managed to get for the rest of us, left hubby's in the oven.  Then the alarm goes off on my phone that Dexcom is high, over 300 well it is about 90 minutes post dinner so not shocking.  Half hour later I get the alarm for no more data.  I go to investigate and find the BG on son's phone is 390. Ugh, make him do a finger poke and get 422.  Made him do it two more times while the dexcom changes to HIGH. 

Hubby arrives home so I alert him to the problems as he is busy complaining that he had to come home early because he has no data on the dexcom after getting a really high reading.  Sharing had stopped working. He went off to check the Dexcom servers for known issues and I followed the handout from our pump class.  I gave a correction - this was difficult because his pod thought he had 2 units of insulin on board and wanted to give only 2 units for correction but to correct completely we should give about 5 units.  Split the difference and gave 3.5 and set an alarm for an hour. Son's Dexcom still read HIGH at the 400 mark. My phone isn't receiving sharing data.  

I found hubby growling at the dexcom server error site.  No sharing right now.  At least we had the BG on son's phone.  Being new to insulin pumps we decided to call the on-call nurse just to walk through steps if the BG hadn't dropped within the hour.  Advised to give up on this pod and give an insulin injection then decide on a new pod or a long-acting insulin and return to injections until a more wakeful time.  We were mentally prepared when we went in to check at the hour mark, Dexcom is still reading HIGH so we did a finger stick and got 440.  

We did a ketone check then deactivated the pod and gave 6 units of insulin via injection.  It was about an hour until son's bedtime but I figure I'm not going to be sleeping for the night anyway and he'd rather have the pump than injections so we picked a new site, back this time, carefully followed our steps, and did a site change. Went as expected.  Of course the change earlier in the day went as expected too.  Set a timer for an hour. 

While waiting we called omnipod customer service.  Our rep told us to expect to have some pods that don't work as expected for a variety of reasons and to always call them in.  We do the same when a Dexcom sensor doesn't last the full ten days or has any other failure so not a big deal.  Remind me to tell you later how a customer service rep can make you feel better or make you feel worse and maybe they don't even realize the power they wield with just the tone of their voice. 

An hour later his BG is dropping in the low 300s and we felt relieved.  HA! Relieved that he was in the 300s.  Diabetes management is a fickle fiend. Checked for ketones, set another alarm, kissed son goodnight.  Here I am typing after that next check.  We're under 200 now but I have no way of knowing if this pod is working correctly or not right now because he has the active insulin from the injection.  Ideally he is about to level out and his pod will run his basal rate and he will have a steady line all night.  Alternately he could continue to drop because he had insulin that didn't absorb well but suddenly starts to take affect or this pod isn't working and his BG will start to climb because there is no basal and no long acting.  Fingers crossed because we have had enough for tonight.  

Alarm is set for an hour from now.  That will be three hours from the injection.  Another alarm will be set for about an hour after that.  If things are holding steady between those two checks then I can sleep for three hours before checking again.  I have to get up and check though because I have no sharing data and his phone has to stay near him to read his dexcom.  

So any unexpected good in this situation?  My sister takes all my phone calls and listens to me obsess on blood sugar and never complains.  Hubby makes sure there is a bottle of wine in our fridge for when I need to settle a bit and makes the phone calls because I just can't with people sometimes. I can post my stressful few hours on the facebook page for other parents in the same situation and they've all been there and done that and they provide a calming reassurance and make sure no one ever feels alone in all this. My friend sees that post and sends me funny text messages to make sure I know I'm not alone.  There is a "community" to being in the type 1 diabetes care club. Dearest son falls asleep never worrying that his life is may be on the line. Hey, and Dexcom sharing just showed back up.  

I am thankful we live now and not 100 years ago or even ten years ago. The continuous glucose monitor is amazing even though it doesn't work 100% of the time.  The insulin pump is amazing even though we don't have it working correctly and it also won't work 100% of the time.  I also believe that both these companies take their product seriously and want to ensure that any failures are remediated over time so they make a more reliable product with every update. All it takes is a phone call to get an item replaced that didn't work as expected and it shows up at our house within a week. Dexcom has even overnighted replacements to me when needed.  

Not going to make it to the next hour mark.  Been watching the BG drop by ten every five minutes for the last twenty minutes I've been typing this post.  In five minutes I'll have to wake son up and give him a juice box. I might be able to wait twenty minutes for that to make a difference or he might end up drinking a couple of juice boxes.  Our record is four juice boxes and four glucose tabs at 2 am to bring his BG to 108 from a scary LOW on the dexcom that stubbornly held on for over an hour.  I'm really not in ideal shape for breaking records tonight. 

Omnipod!

 We finally received our Omnipod DASH® and then had to wait another six weeks to get both our pump class then pump start class done.  I know there is a pandemic but we are coming up on our one year and were beginning to think we wouldn't be on an insulin pump.  Thankfully having a child with diabetes is like having a baby - you go through all the pain and then you don't really remember it once it is over.  You just look at the baby and are thankful.  Sure the baby is sometimes cranky and difficult but still, a lot of joy to be found there.

Our pump class was on zoom which worked fine for us because we've been using zoom to teach our students remotely since last March.  The class was a powerpoint and just covered the handouts we had already read but it was a hoop to be jumped and we were ready to go.  We were told in that class that our pump orders would go to our Omnipod rep and then we'd schedule our pump start training.  Two weeks passed and we had another appointment with our endo while we waited.  He thought we'd have started but nope. Thankfully that seemed to get something moving and our ominipod rep called the following Monday and we had our pump start virtually that same Wednesday.

I will say there are a lot of pros to the Omnipod for our son and us.  Our rep walked us through our first pump site and it took only ten minutes.  We've done three more since then and felt confident.  Our son is thrilled that it doesn't really hurt and that he doesn't have to have 5+ injections per day anymore.  

We definitely don't have the right numbers plugged in yet so that isn't awesome.  We had been running on Multiple Daily Injections in range between 80-180 80% of the time with some days even better control.  Now that we've been on the pump we are in range <20% of the time.  Part of that is because we don't give a correction except at our 3 meals right now unless he is over three hundred.  Our pump is also set to not give a correction until it has been 4 hours since he last bolus but he eats lunch 3.5 hours after breakfast, and is always high, and no correction is given due to perceived insulin on board.  I know this will get adjusted over time and eventually things will be back to in range.  His BG on the insulin pump is a much straighter line without major peaks and valleys, it is just a line that is about 230 instead of 120 where we want it.

And waiting and waiting and waiting

Insulin Pump 

I really wanted my next entry to be about getting our son started on an insulin pump but NOPE!  We are still waiting.  Insurance would've covered our insulin pump at 6 months post diagnosis which was June 9th but it is now Oct 17th and we have yet to start. We actually have the pump in our possession now which is a big jump from where we were in August when I last posted but it might as well be a paperweight.

We did our pump assessment class through "independent study" and two weeks ago we took the 2nd class which was via zoom.  First we received an email with handouts to read, which we read.  Then we logged into our meeting on our assigned day/time and waited for over twenty minutes; technical difficulties. When we did get into the meeting our trainer read all the handouts to us from a powerpoint and then we were told our pump orders would be sent to our pump rep after the class and we should expect our final "pump start" class to be scheduled by our rep.  

Two weeks and counting and we continue to wait.  I've reached out to children's again and been told that they are a bit behind but they would try to do it that day...that was last week.  There isn't anything to be done either which is the most frustrating part.  I don't want to be the parent that gets a reputation for being mean or aggressive but I FEEL LIKE getting mean and aggressive.

School & Coronavirus

So we've been back to school in all it's remote/distance weird glory.  We'd hoped to start our son on his pump at the beginning of the summer to alleviate the added stress the beginning of a school year can be for a family with two teachers as parents. All four of us "go" to school.  Not this year though.  No insulin pump really prevented us from feeling our son could be on campus when it opens; his school is fully remote now anyway but we signed him up for 100% virtual for the whole year.  Our older son is a Senior this year and he chose 100% virtual as well.  I'm back to campus full time with K-2 students with exceptional needs and my 3-5 graders will be back in a week.  Things seem to be going well so far but some students have arrived with fevers and the "social distancing and health" measures that are being promised aren't being enforced with fidelity.  I anticipate illnesses will be spreading in our building this winter. 

Beyond Frustrated!

 I got a call today from the Children's Hospital.  The kind nurse was calling to make sure I'd received a response to a voicemail I left for them on July 30th before she deleted the note since no one had marked it "done".  But no, I had not received a call back before today, no it has not been resolved, no. 

I understand there are procedures and rules. I understand there are hoops to be jumped for insurance. I understand the Endocrinology Offices moved at the beginning of the year and they are still trying to sort that. I understand that there is a pandemic.  I understand that I am just one mom trying to provide the best health care for one child.  I understand but I can't just stop...I have to keep making calls and sending emails and reaching out.  If I don't keep pushing it seems the procedures that get us the medical equipment don't proceed.

We knew in December we wanted an insulin pump and we told our care team that. Our insurance company requires 6 months post-diagnosis before a pump can be approved.

We talked about moving to the insulin pump at our 30 day follow up.

We talked about moving to the insulin pump at our 3 month follow up and we tried to get everything we needed to do done at that point but because of the pandemic they were not doing pump assessment classes but were going to start doing them virtually "soon" and they would call us.  That was the end of February. 

At the end of May we had our 6 month follow up.  We said we wanted the insulin pump.  We presented our research to our provider and explained which pump we wanted and why we had chosen that one. He said pump assessment classes would be starting virtually "soon" I pushed and grumped and he finally relented that he wasn't sure when the assessment classes would be going virtually and maybe since we had done the research we could do the class as self-study and he had a nurse send us the power point.  He said he would submit the paperwork for our pump right away and would reach out to our pump representative that day.  He also said someone would call us in 3 days to see if the power point raised any questions. We didn't receive a call but I sent him an email stating that we did the slideshow, had no further questions, and still feel we had chosen the right pump for our son at this time.

We waited through June...nothing.

In July we started emailing and calling and leaving messages and connecting with our pump representative.  The rep said they were still waiting for the initial orders from the hospital.  

At the end of July we received a call from the hospital staff with "exciting news" they were going to start virtual pump classes at the end of August and we were on their list.  I explained that we weren't waiting for a pump class and then asked if she could double check that we were moving forward.  She transferred me to voicemail where I left a message saying someone would call me back in 24 hours.  Nope.

Then today I got the call from the very kind nurse just making sure before she deleted the note that my issue had been resolved.  I'm sorry, kind nurse, that you took the brunt of my emotions this morning.  I know it isn't your fault and I tried to keep my emotions under control but you ended up having to speak to a sobbing woman who is beyond frustrated with the situation.  But I had to trust you when you said you would figure out what was going on and call me back.  After all this I had to trust you to call me back...and you did.  

There are no notes in my son's digital records about the insulin pump.  This is not uncommon because medical professionals are overwhelmed right now and it is more important that they see patients than that they type their notes into a computer.  I know they catch up eventually but it isn't helpful when notes are necessary so that others people can read them and take the next step.

I did receive a return call today from that same nurse.  The notes aren't updated in the system but are on the desk of the same person who has been gathering the necessary Dexcom Data and other paperwork and we just need a doctor's signature before the whole mess is handed off to the insulin pump company to submit to our insurance.  I'm back to feeling hopeful but I wish things didn't have to be so frustrating.  If everyone agrees a device is better care and everyone is on board for having the device and the device is covered by insurance...why must it take months and months to get everything aligned perfectly to get going?  Fingers crossed that the next person I hear from is the pump rep that paperwork is finished and they are moving on to insurance.  If I haven't heard from them by the end of next week then I'll sit down with my notebook, pen, glass of wine, and an open afternoon to make all the calls necessary to prompt things again.

Daily Highs or Nightly Lows

While we continue to wait for our son to be approved for an insulin pump (yes waiting and waiting), we are continually trying to manage the ever changing demands of his T1D.  Of course we have the honeymoon period of diabetes that was giving us the sense that things were in pretty good control then we got the CGM and realized that things were in control every 3 hours but in between they were fluctuating wildly.  Now we seem to be going through a period where our current ratios and corrections aren't working and things need to change.

Since we have the Dexcom, we get to look at his patterns over days and weeks.  As someone with a background in managing data and making adjustments to affect change this was right in my wheelhouse.  Unfortunately, waiting 14 days between changes has not really been my forte.  Our medical team really likes to see a pattern that lasts over 10 days before making an adjustment to his basal insulin or even his daily ratios.  I feel like we should be making adjustments a little more frequently than that.  So, we fall somewhere in between. 

We've been increasing N's basal (long acting) insulin over the past two weeks.  He has a pattern of daytime high blood sugars.  His BG starts rising from the moment his feet hit the floor in the morning until his breakfast insulin kicks in.  Then three hours later, when the insulin should be about done and the food should be about gone, his BG starts rising again.  It also rises whenever he is exercising.  It rises and rises.  For several months we would go days without having to give a correction, just covered carbs at meals and we were good.  For the last month we've had to give correction every 3 hours all day long and at least once in the middle of the night!  So up we go with the basal insulin.  Each time it is adjusted the other ratios end up needing adjusting too.  So this process takes several weeks to get a new balance.

Well our new balance is one of the following: we can have basal at level X and he has daytime highs or we can have basal and level Y and we get nighttime lows.  Apparently we can't be in range for both day & night.  I know when we get on insulin pump therapy we can set different basal rates for different time periods so I'm looking forward to that but for now I'm stuck with high blood sugar during the day but a nice steady line through the night or in-range blood sugar during the day with a falling line and a need for a snack in the wee hours of the morning.  I'm opting for the 2 a.m. snack right now since I know the long term effects of high blood sugar and because our son does have a CGM that wakes me when the BG gets below the level I set for it.  The weirdest thing is that it doesn't take much in the night to correct the problem.  He BG falls slowly over several hours until it dips out of range.  I give 4-8 grams of carbs and he bumps back up to 150 then starts falling slowly again until he wakes in the morning.  Thankfully we have the dexcom to wake me up and he is able to crunch up a glucose tab without much memory of being awakened at all.  

I'm tired though!  I'm no spring chicken and waking in the middle of the night is hard on me.  I remember when my kids were under 5 and there was so much nighttime waking going on...how did I do that and still work?  I guess age is a factor.  TIRED.

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 insulin...it 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.