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.

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. 

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. 

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.  

Ugh!

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!

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

WAITING

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.

Highs & Lows can appear out of nowhere!

I feel like we've come a long way with our understanding of type 1 diabetes in six months.  Who knew we'd have to get so knowledgeable but here we are.  The thing no one can help with though is that you can do everything right, everything you've been taught, and yet...

Highs &  Lows can appear out of nowhere!

They come out of nowhere sometimes and there seems to be no rhyme or reason.  I know there probably is something: growth spurt? low-level asymptomatic illness? change in the weather? poor sleep the previous night? hormones/puberty? full moon?

N my 11-year-old with T1D has been amazing for the past six months.  He is handling it all with good humor and some resignation.  I know he isn't "sneaking" food or forgetting to bolus because there isn't a need for him to sneak and we make sure there are always two brains working out a bolus.  We are trying to teach him good habits to take care of his chronic health condition because someday he'll be out on his own and we won't be right there anymore.  

N likes cereal for breakfast.  I know, I know, there are better options but we've been assured (repeatedly) that he can and should eat what he wants and cover the carbs.  What I mean by better options is that there are carbs that have less effect on the range of blood sugar, the spike and fall.  High fiber, lower carb meals work better for that post-meal spike and several hours of blood sugar stability and we know this but we also know he is 11 and he likes cereal and he can have it.  He doesn't eat fruity choco marshmallow whatever, he eats a whole grain cereal but it is still cereal.  He gets his bolus and we wait 25 minutes to give his breakfast of 30 grams of carbs and a protein.  About an hour later his blood sugar goes up out of range but it usually comes back down within an hour.  This has been his norm for the three months we've been "distance learning" by staying home.  Same meal every morning.  The boy likes his routines!  

We've tried adjusting the time between the bolus and the meal and 25 minutes is about it.  If we wait too long he has a low followed by a spike and if we give food too early the spike stays elevated longer and the peak is higher so 25 minutes.  Until two weeks ago.  Two weeks ago the spike was 100 BG higher than previously!  It also spiked up and stayed up for 3 hours.  It came back into range about twenty minutes before his next meal & bolus would occur.  

The other thing we noticed, about the same time, is that his lunch bolus isn't working quite as well and there is a weird drop and raise between lunch and dinner.  He gets lunch at about noon and we can only give insulin every three hours due to insulin on board and not being on a pump or calculator that can help us.  To avoid "stacking insulin" we've been told to wait 3 hours before correcting with insulin or bolusing & eating.  So he eats at noon, has a smaller spike that is on the high side of in-range for him at 170-180, sometimes out of range but lasting less than thirty minutes above range.  Then at about two hours & forty minutes his blood sugar falls to the lower end of his range to around 100.  He doesn't usually want an afternoon snack; probably because he isn't going to school and working up an appetite.  He could have insulin at 3 but he often doesn't want a snack and he is in-range so none is needed.  Then he spends the next hour with a steady glucose rise until he is out of range and he stays that way until dinner at 6.  I know, I know, I could give a correction but then I feel like I have to push dinner back or worry that I'm stacking insulin.  Ugh!

We have our math, ratios, corrections, factors, etc.  We do the math as we've been taught and most of the time it works out.  But for two weeks now we've had this nonsense that makes me wonder what I'm missing.  Thankfully we can send in our numbers to the medical team at the Children's Hospital and get a professional opinion but I sent in numbers this morning by 9:30 and haven't heard anything back from them.  Since it is Friday, I assume I won't hear anything until Monday.  

So we'll keep doing what we do.  We may swap out some preferred foods for less preferred ones for a few days to try to get things back into a more preferred pattern.  Our CGM lets us look at our graphs and helps us check for patterns.  It also makes suggestions for ways to adjust when a pattern emerges and we've used this to change our long-acting insulin dose over the past week but it hasn't changed the daytime pattern and we are starting to see midnight lows again so we are holding.  

Type 1 Diabetes is just an uncooperative toddler that follows rules when it feels like it and shakes them all up when it doesn't.   Here's hoping we aren't heading into a pattern of return to the 3 am club.  Right now his glucose is in range less than 80% of the day even with corrections every three hours, and at night he is dipping below range between 11:30-12.  

I guess this is why I drink so much coffee, or wine...

How is an Insulin Pump like a Pandemic?

So I'm a fairly new to type 1 diabetes parent.  My son was diagnosed at age 10 less than six months ago.  I'm also an educator during a global pandemic that has closed schools across my country.  I've been working / teaching from home since March 13th and it is now May 30th.  Our county is on a stay home stay safe order and while other parts of our state are moving to slightly fewer restrictions, my county didn't meet the minimum criteria for that yet.  Certainly, I'm not an expert at any of these things but I have come to an understanding with my own emotions at least.

It seems there are a lot of powerful feelings related to the pandemic and the resulting recommendations.  There is fear, loneliness, anger, regret, resentment and the whole gamut.  I had a conversation with a friend who said she'd just rather die than keep living with all these restrictions.  She said it was "no kind of life".  

I talk to educators and parents every day.  They are tired, they are frustrated, they are done.  They want life to go back to normal.  Kids back in school, economy open, going to work, coming home, enjoying their time off, going out on the town and all that comes with a healthy world.  

Many want to blame someone, to point a finger at another person and say "you are doing this to me and it isn't fair."  To feel that this situation is being forced upon them (which it is) but they want a person to be responsible.  I understand.  If a person, or government, or conspiracy, or whatever were behind this then it can be changed, channeled, fixed.  I have a lot of empathy for their feelings and their struggle. They want someone they can call and tell that they need X,Y,Z for their quality of life. They've tried to be good and follow the rules but they don't want to wait anymore.  

On a separate and yet related note.  We've been waiting for our son to be approved for an insulin pump by meeting all the requirements of the insurance company which included being six months post-diagnosis.  That means we should be able to get started on pump therapy in June. We've been working with our medical team and the pump company to check off all our requirements.  There were concerns about the inability to attend training during the pandemic and how could we meet those requirements at a time like this but these issues have been resolved and creative ways have been found to meet those.  We thought we had things set up and ready to go and have been quietly marking the days off in our minds to a time when our son's quality of life & diabetes management would be improved as he moved from multiple daily injections to insulin pump therapy.

About three weeks ago, I got a phone call from the insulin pump representative.  The insurance company has suspended new prescriptions until the next update on the pump we've been working towards.  We were planning to get a pump at the beginning of June and instead we may have to wait until the end of July or beginning of August to get started on the pump.  

I felt all my feelings about this.  Anger, resentment, sorrow, and exhaustion.  I want to be angry at someone.  I want someone to blame so I can call that person up and tell them how important this thing is to me and my family.  How it will make our quality of life so much better.  How we've been struggling and waiting for this to make it better.  We've tried to be good and follow the rules and we don't want to wait anymore.

So How is an Insulin Pump like a Pandemic?

Maybe you already know what I'm about to say here.  The pandemic SUCKS! Waiting for an insulin pump SUCKS!  Yes that is true on both counts but it isn't the only way these two things are alike.  The insurance company won't let us have an insulin pump!  The government won't let us live our lives! I hear these statements more as demands in my head as I read them back.  These aren't really the truth of the situation on either count.  Does it change if we ask them as questions...Why won't the insurance company give me an insulin pump?  Why won't the government relieve the restrictions?

If I assume BEST INTENT then the answers are the same.  Waiting SUCKS but it is necessary for the greater good. I'm not knowledgeable enough to make all the decisions because I can't be knowledgeable in everything.  I have to rely on experts. What has the greatest positive affect on me may not be best for the majority.  I have to rely on the systems and structures that are part of my country; things I've had a vote in. Are all the elected officials people I chose?  NOPE but I have faith that the system will keep the greater good going.  Maybe I'm naive.  I know an individual person can be selfish, I'm proof of that all on my own.  These people, in these positions, are working under a set of guidelines meant to account for the most positive outcome for the majority.  

We have leaders on purpose whose job is to work towards a greater good.  My medical providers and the insurance company are also working towards a greater good.  In order to work towards a common good that supports a majority then...

I DON'T ALWAYS GET MY WAY!

I've talked this over with some of my very close friends and we all come to the same conclusion.  We don't always get what we want right now, in this moment, even though we may be good and deserving and doing all the right things because we live in a society and a community.  This is HOW I support my community.  Vote, work, try, live, laugh, love, accept, empathize, and assume best intent.

Again, I know it seems naive. I know not every human in a position of power is putting the greater good in the forefront of their mind/actions.  I know the insurance company has a bottom line.  I choose to believe most PEOPLE are good and I choose to believe that those in positions to work for the good of society will do so.

If our leaders threw open our world today and it was too soon the losses would weigh on all of us for the rest of our lives.  

If the insurance company ignored their policy and it had a negative impact on an already compromised group's health we would hold them accountable.

Our community will eventually move forward with a lessening of restrictions and my hope is that it will be well timed and the cost won't outweigh the benefit. My son will get on insulin pump therapy and my hope is that the cost won't outweigh the benefit.

I'll wait.  I'll do what I can.  I'll check my privilege and entitlement and trust in the best intentions of those who are meant to advocate for the welfare of the whole community.  I don't really have a choice in this waiting or how long it will take but I always have a choice.  I can choose to make it miserable and filled with anger and resentment or I can choose to make it a moment of grace, patience, love, and acceptance.  In a life that may last 100 years, this time will seem but a moment when I'm looking back.  I'd like that moment to be one I'm proud of.

I appreciate my life in all of its highs and lows. 

Spring Break & Trying the Omnipod Sticker

Spring Break!

We are still home but this week is technically spring break!  I wish I could say I"m finally taking a break from online meetings and staring at a computer all day but our state just announced school closures will continue through the end of this school year.  I knew that was coming but it was heartbreaking to realize this school year will be distance all the way.

I am also working on my renewal for my National Boards.  This is a pretty in-depth profile of my professional growth from the past nine years and includes video taped lessons and reflections on my teaching practice.  The original timeline for completion was May so my plan was to video tape throughout March, then watch the video lessons, pick the best, and work on the reflection writing over spring break.  Fortunately I did begin video taping the second week in March but unfortunately I had at total of 3 days of video taping lessons before Covid-19 closed our campus.  Many of these lessons couldn't be used because I did not receive back permission slips to include all of my students in the submission and in a classroom students are often walking around in the background while you teach. After deleting all of those I had exactly three lessons left that met the time requirement.  Hmmm, wish me luck.

Omnipod Dash

So my T1D son is wearing an omnipod dash "sticker".  It gives us an idea of the adhesive, the weight and size of the pump, and how well he tolerates it's presence on his body for 3 days.  It isn't an active pump though so we get none of the benefits and we didn't get the whole experience.  This pump is tubeless and waterproof which are both strong pros for my son.  He is worried that his cat will chew on a tube in the middle of the night because Alfie currently chews up any earbuds he can find.  I like that they are in clinical trials for a new system that would work with his dexcom on a loop system but we can't put our faith in that  happening soon.  We have to choose from what we have in front of us. Sounds like this system would require him to carry his phone for the dexcom and the separate PDM.  We'd be able to suspend his basal insulin if needed to prevent hypoglycemia. He would be spared the 5 daily injections he gets currently.  That is a lot of positive.

Getting Used to CGM

We're up and running with our Dexcom G6 and we love it; especially N who is the one wearing it and getting a reprieve from all the finger poking.  He was very nervous to do the initial insertion but it went smoothly and he said he barely felt a thing which was a relief for both of us.

We started his first Dexcom cycle on Saturday right after breakfast and we have only done a finger poke check 1 time.  It's funny how you become comfortable with the old and familiar though.  I've wanted to confirm his readings a million times since Saturday but I'm resisting the urge.  We are getting good, reliable readings and he shouldn't have to poke his finger just because I now know we aren't managing things quite as well as we thought.

Things we like:

• easy to insert with little pain and easy to follow directions
• readings are excellent, update every five minutes
• device can be set for a high and a low alarm in addition to the non-optional critical alerts
• can be read on the sensor or a phone app 
• turns out my son doesn't have a supported model of phone so we'll be upgrading soon
• once he has the right phone his numbers can be shared to my phone so I'll get alarms too
• downloading to a computer is easy and the information is presented well, easy to read, and is already making a difference in how we manage
• you can add information like when/how much insulin you give, carbs, exercise etc
• this is a plus but I keep forgetting to do it - I'm so used to writing in the book that it has become automatic but inputting into the sensor isn't happening consistently yet

Things we aren't loving:

• alarms - These are a plus for me but they are a challenge for N.  He has mostly been relying on the adults to manage his numbers and make sure he stays in range.  We may insist he have extra water or ask that he take a break from the computer and get some physical time and he is always very easy going about it but he hasn't really been paying attention to why we make these requests.  With the alarms he is the one who gets the alarm and reads the message.  He then comes to me to figure out what we should do.  Again, this is a plus because I am able to discuss what is happening, why, and what to do but for him the first few days has been more stressful.
• Stickiness - he has been wearing his dexcom for three full days with light activity.  We are on social isolation due to covid-19 so he isn't going to school and we aren't really leaving our house.  The sticky tape holding his device in place started peeling up on day two and it is supposed to keep the device in place for 10 days.  Thankfully we have amazon delivery and we've just received some over-patches to try to keep it in place for the duration.  We'll see how they do.

Now for the reason we got the dexcom in the first place; it is supposed to help us do a better job of staying in his range.  Turns out when you have more data/information, you realize you weren't managing things as well as you'd thought.  When we were only taking data every three hours, before a meal, (and of course the middle of the night data) we were seeing that most of the time he was in range.  We were feeling pretty confident.  That's probably why they don't want you to start of on a CGM because the learning curve would feel much steeper.  Now that we have the Dex we see that we are spiking after meals, sometimes into the 300+ range!  He also hangs out in the mid 200 range for about 2.5 hours at dinner and comes back into range just before the 3 hour mark.  So we used to think we were doing well at our dinner management but hmmm not so awesome.

The positive to all of this is that knowing is helping us to make adjustments.  We've pushed his wait between insulin and eating to 20 minutes and that made a noticeable difference in the severity of the spike in numbers.  The first day we just did our normal thing and didn't worry about things.  Day two we started paying attention and thinking about adjustments.  Yesterday we made adjustments to the wait between insulin and eating and also some changes to the bedtime snack options.  Today I looked at all those graphs on my computer and see the benefit of the changes and where we need to keep adjusting. 

It is a whole new game having the continuous glucose monitor.  Turns out I've gotten a benefit from the corona virus, we are home and able to spend time figuring this new information out and how to manage better with some time on our hands.  There's that unexpected good in an otherwise unfavorable situation.

And the wait goes on...Continuous Glucose Monitor

Yes we're still waiting.  We've been waiting.  Sometimes patiently waiting and sometimes angrily waiting and sometimes frustratingly waiting.

Our insurance company covers pretty well for diabetes supplies once they decide to cover them.  They take their time deciding though.  We seem to need to do a lot of pushing and calling and submitting again and again the same things.

We were told in the hospital that we could submit for a CGM 30 days after diagnosis.  So we did that on Jan. 9th.  We waited a couple of weeks then called to check on the status.  Nope, we submitted our request incorrectly.  We contacted our endocrinologist and they said they'd get back on it.  More waiting.  Two more weeks and another call but nope nothing going on yet.

About three weeks ago I got a text from the medical supply company that my paperwork was in and they would be reaching out to me soon.  Hooray!  I actually started crying, at work, in front of my coworkers.  What a mess I've become.

So we wait again, for another two weeks.

Then I get a text message from my ex-husband letting me know that insurance informed him that they declined to cover the CGM because there was an error in paperwork.  The thing is...why was he getting information and I wasn't.  The kids are covered twice first by me and then by him.  We both have the same insurance provider.  His insurance is the secondary coverage.  So I call the insurance company again hoping that the secondary coverage wasn't going to be kicking in any help but that the primary coverage had approved it.  Nope.

It was declined because it came from the endocrinologist and not the pediatrician (the pediatrician is in network and the entire Children's Hospital and all their staff are out of network).  So then I ask why my ex husband received this information as the holder of the secondary insurance but I wasn't contacted.  So they checked "my" account and told me the phone number they had on record was his.  Ummmm.  We've been divorced for 9 years!  Last year I had the same insurance company for my kids and he was unemployed and had no insurance for the kids.  We have open enrollment every year in Nov. and I updated my information but stayed with the same company.  We did both go into the new school employee benefits network since I have always been a teacher and he has recently become a teacher.  So now I have someone researching my account to see how his information landed on my account - it wasn't just his phone number either, it was also his address and he has been receiving all of my mail - not just for the kids but also my medical information!  Of course all this is a different battle so...

So armed with my new information, that we need the pediatrician, I give his office a call and talk to a nurse.  I LOVE NURSES!  I have always loved nurses. Lots of relatives are nurses.  Nurses have always been kind and knowledgeable. My son's pediatrician is awesome but he wants my son to be seeing a specialist for his diabetes.  The nurse and I talk it through and although they NEVER do these types of requests they are going to figure it out and call me back.  They are going to contact his endo. and get all the information on what she is recommending and then they will submit.

I get a call from her the next morning that they have everything ready but they don't know where to send the request.  Hmmm I don't know.  So I call the insurance company.  I explain that we need a pre authorization and my pediatrician needs to know where to send the paperwork.  But they don't understand and ask a bunch of questions then finally decide what I need to do is go pick up the prescription from the Dr. and take it to a pharmacy 100 miles from where I live because that is the nearest affiliated pharmacy.  At this point I would've driven the 100 miles there and back but  I know that won't work so I tell them to put me up to a supervisor.  Supervisor thinks I should talk directly to the medical supply company but I explain to him that we already did that and there was no pre authorization on file with insurance so it got declined.  After talking to him for a long time he has me talk to someone else.  This went on for 3+ hours.  No one could just give me a fax # or agree that there was any such thing as pre authorization although I know there is for my insurance since I needed it recently for my older son.

At one point my insurance company said they knew who I needed to speak with, put me on hold, then when the line picked up I was talking to a representative from the medical supply company.  Unfortunately they couldn't do anything without the insurance company having the pre authorization.  So I had to call the insurance company back but not before I burst into tears at the poor medical supply company rep. ah Kristin, she was very sweet as I completely broke down and there was literally nothing she could do to help at all except listen.  I finally had to give up for the day.

This morning I called the pediatrician's office again and was surprised to get an update.  The medical supply company reached out to them and gave them a phone number and fax number for the pre-authorization department at my insurance company.  So they called in and spoke to multiple people and got a lot of "conflicting" information.  First they were told that my insurance wouldn't cover a CGM no matter what a physician recommended.  Then they talked to someone else who told them they couldn't make the request it would need to come from the Endocrinologist.  Then they were told by another person that it was fine that it came from the Endocrinologist but they always have to verify that the primary care physician agrees with the treatment and they'd called but found out my son doesn't have a diabetes diagnosis so the Dr. declined the order...more on this in a minute.  Finally they reached someone who said they would review the request and sometime in the next 2 weeks the authorization department would decide but if they did agree to cover it we should know our deductible applies (FINE).  To hedge all the options my son's pediatrician & amazing nurse and staff decided to do ALL THE THINGS.  They called, they faxed information in, they called the Dr. that had rescinded the order and explained the situation in case he got called again, they called our Endocrinologist and had her fax in another order as well.  WOW!  Fingers crossed.

So I called insurance again today to see if there is anything else I need to do, to make sure that Dr. that rescinded the order isn't listed anywhere on our file, and to make sure that there would be notes on our file that we were actively working together with our pediatrician and endocrinology team to get this device.   The representative I spoke with today was really helpful, she was thoughtful and tried really hard to address my concerns.

First she figured out that the Dr. that had been contacted and rescinded the order was the physician from the urgent care clinic that had diagnosed my son as having a sinus infection while he was really in diabetic ketoacidosis; we saw that Dr. in an urgent care clinic and within 12 hours my son was on a helicopter being transported to the children's hospital after we took him to our local hospital emergency room.  That same physician never called us back with the results of the bloodwork he had ordered on my son.  She assures me that she left very specific notes regarding this physician and made sure his name is NOT listed anywhere in our file except in that note.  He shouldn't be contacted again regarding my son.

She figured out how my ex husband's information was being updated into my account.  Again she left very specific notes in the account about the status of the children and their coverage as well as locking their address & phone number so they cannot be changed except by me.

Finally, she called the endocrinologist and pediatrician for me and made sure they were each resubmitting the request to the correct fax number for the authorization review department.

I want to believe that she did all these things and that early next week I will hear that we were approved and that our CGM is on its way - finally.  I want to believe but I just can't really.  I very badly want her to have come through and for things to work out.  But if not, I am ready to call again, spend hours on the phone, pester anyone and everyone, and keep going until we get the best possible care options for our son.

If you are out there, fighting this battle too, you may never see me, we may never speak, we may never meet, but I stand with you and I know you stand with me.  Keep going.  Insist on the best care for our children.

School Days & Weekends

We send our blood sugar numbers into a team about once a week.  Sometimes they ask us to make adjustments to our ratios, correction factor, or long acting insulin.  This is awesome and I am super thankful that we live in a time when I can send information in and have someone with expertise review it and make adjustments to our care of our T1D son. 

Here is where I have some strife though...weekend numbers are dramatically different than school day numbers.  There are so many reasons I believe this happens.  I'm never sure if I should send in weekend numbers or weekday numbers or try to send in all the numbers.  The team is usually looking for 3 days of numbers. 

During a school day, our son wakes at a specific time.  He has breakfast, usually cereal, and takes less than twenty minutes to eat it.  He rides a bus to school.  He has only twenty minutes to eat lunch at school so he asks for a simple lunch that he can eat quickly.  He has two recesses outside and twice a week he has a PE class.  He does a BG check at about 2:30 and has a snack as needed to stay in range.  His weekday numbers tend to stay between 75-110. 

On the weekends, I let him sleep in a bit (only an extra 30 minutes).  He prefers waffles and bacon on his days off and takes 30-40 minutes to eat since he is visiting and relaxed.  At lunch he again takes 30-40 minutes to eat and he typically eats 20-40 more carbs at this meal than what he eats in his school lunch.  Sometimes he is very active on the weekend and other times he is relaxing and watching TV or playing video games.  Snack & dinner are about the same on weekends and weekdays.  His weekend numbers tend to range from 100-160.

When we send in 3 days of weekday numbers we often get a response that we may need to lower doses.  When we send in weekend numbers we often get a response that we may need to increase doses.  Over the past four weeks we haven't made any changes because we go back and forth between sending in weekend & weekday numbers based on when the team requests the next set of numbers. 

We're still waiting for approval on a continuous glucose monitor and I'm hoping that changes how we are watching and adjusting for my son's best health.  Until then I will keep sending in my numbers and wondering if I'm missing a necessary change because we've had lot of 3 day weekends recently:)

Wonky Numbers

Sometimes you just get a WONKY NUMBER. 

You do everything the way you are supposed to.  You give a typical day of meals, all standard fair, you cover carbs and make sure your T1D son is getting enough fluids.  Things have gone according to plan all day with numbers right in range.  Then you do the bedtime check and WONKY NUMBER.  These always seem to show up at bedtime or right before you need to leave the house.  They are never the first number of a weekend morning where you had no plans except lazing about in pajamas.  Nope.  WONKY NUMBERS are for making you lose sleep or change/cancel plans.

So things have gone fine today.  He woke up right on target.  He ate the same breakfast and lunch that he has had 100 times before.  It was not a PE day at school.  All his checks were right on target.  No corrections given all day.  So at bedtime we do the check expecting to be in range but NOPE we are at 220.  Hmmm wash your hands and test again just to be sure but yep out of range.

Now I don't want to make a big deal out of it but we have been very lucky to be in range for the past several weeks.  Things have been going along as expected and our team even gave us the green light to stop the 3 a.m. glucose check.  (this is a whole different kind of problem for a later post)

How am I supposed to sleep now?  WONKY NUMBER!!!  

What if it was a fluke and I've just corrected him so that his blood glucose plunges to an unsafe low while he sleeps?  Of course, this isn't a very likely scenario.  The likely scenario is that the insulin from his dinner shot didn't absorb well or the apple he ate was more "carbalicious" than a typical apple. (Don't get me started on how some of the fancier apples can pack twice as many carbs as the more standard brands.  Our carb counting book just gives us a generic count but some apples are very carby.) 

I know it probably isn't necessary but this WONKY NUMBER is going to ruin my sleep tonight.  I've already set my 3 a.m. alarm because if I don't check I'll be up all night driving myself crazy. 

Morning Routines

I have always been the kind of person that could be ready to head out the door in about five minutes.  I don't wear make-up, I own only a few pairs of shoes, I wear jeans and t-shirts, I put my keys in the same place when I get home each day.  In the morning to get ready for work I need time to shower and throw on clothes then out the door I go.  Since I live only five minutes from my job I need to wak up about 20 minutes before I have to be at work.  Uhm, until now.

There is no "grab your keys and let's go" with type one diabetes (probably not with a lot chronic health conditions).  My morning routine since my son't diagnosis has changed.  Now I wake up and drink my coffee at home (saving myself lots of money since we don't do the coffee stand anymore).  I set the oven to preheat, start the coffee to brew, then hop in the shower.  After I'm dressed I put bacon into the oven and sip my coffee while I pack N's lunch for school.  I write down his formula and carb counts in his notebook and make sure his kit has all the necessary supplies.  The timer lets me know the bacon is ready and I go wake N up for school.  I do a glucose check then head back to the kitchen to calculate his insulin for breakfast while he gets dressed.  He usually eats the bacon while I finish getting his breakfast set up.  We get on our shoes and coats, he gets his insulin injection, then we hop in the car.

We arrive to school and get settled in my classroom then my timer lets me know he can eat his breakfast.  N likes to listen to stories read aloud (storyline online or books on tape/cd) while he eats breakfast.  I'm on the clock at this point so I'm doing my morning planning or I head off to meetings in the conference room.  About thirty minutes later N gets on a bus to go from my school to his.

Not a bad routine but it definitely took us a couple weeks to figure out what works best for us.  Thankfully my job was very forgiving.  The first couple days I was late.  N would have a morning low or he would want something for breakfast that took too long.  I was also trying to give him the insulin and have him eat at home before leaving but in order to arrive to work on time he would be eating too early leaving well over three hours between his breakfast and when he has lunch at school.  If he eats too early he is low before lunch.  If he tries to have a snack between breakfast and lunch then he isn't hungry at lunch and would be low at afternoon snack from not eating all his lunch.  We've tried this and tweaked that and finally gotten into our groove.  This routine is working for us as long as N wants cereal and fruit for breakfast.  Sometimes he wants waffles or scrambled eggs though.  Right now that doesn't work on a weekday so we save it for the weekend.

Maybe the morning routine doesn't change much for some families but for us, most of this was a change.  N used to go to a before school program where they would serve him breakfast and he would have time to play/visit with his friends.  I did speak with them about his diabetes and what the mornings would be like for him if he continued to go to their program but ultimately we decided it wouldn't work out.  The program has been great for both my kids but the daily supervision is from people in their early twenties.  There are a lot of kids from 1st - 5th grade and not a lot of staff.  There are rules that everyone must sit down and be served the breakfast.  Ugh it just wasn't going to be reasonable to expect them to adjust things for him and I would've been worried.  I figured out our new plan and was fortunate that my job allowed me to make the needed adjustments.

Thankfully, school is a whole different scenario.  N has a chronic health condition and is provided a health plan &/or a 504 or IEP to ensure that his needs are being met at school.  I met with the school nurse and his teacher before sending him back to school and we developed a health plan for him.  He is able to manage his diabetes with no repercussions.  He can have a snack, get drinks, keep his phone on him/with him, can have breaks from testing, and may see the nurse whenever he needs.  His teacher keeps no carb snacks in her mini-fridge that I send for him to have when he needs/wants.  If he asks to go to the nurse she always has a friend of his go with him to make sure he gets all the way there (sometimes when blood sugar is low a person can get confused or disoriented or even pass out).  I still worry about him at school.  If there is a substitute or if they are doing a lot of extra activity in PE or what might happen on the playground but those scenarios should be covered by the health plan.

I'm lucky I work for our school district and I have the flexibility of being a teacher who works the same hours that my son is in school.  I'm fortunate that N's elementary school has a full time nurse on staff and that his teacher was very open to learning about diabetes and making sure that his needs are part of her daily plan (especially when there are parties or special activities).

I get up one hour before I have to be at work now and I always make it on time.  I don't have to worry or feel anxious in the mornings because we have our routine figured out and it stays pretty consistent.  I do wish we could sleep in on the weekends but for now we keep to a pretty tight schedule in order to keep N's diabetes well managed.  He gets to sleep in about 30 minutes later on weekends but I get up at the same time.  My physician says I'll probably live longer because I keep the same hours all the time but he also says stress can take years off your life so maybe it's a wash:)

Still, I feel lucky that I'm in the job I am and that it is so close to my home and to N's school.

Hurry Up & Wait

It's been about six weeks since N was diagnosed with type 1 diabetes.  It is definitely a learning curve and making the proper adjustments takes time.  There is definitely a pattern I'm noticing though where we hurry a bunch and then have a long period of waiting.  HURRY UP...WAIT.

When he was in the Children's Hospital we were in the Hurry Up phase.  Hurry up and learn all the things so you can go home and be the best artificial pancreas you can be.  Hurry, hurry, hurry, learn, learn, learn.  Then we got home and it was WAIT WAIT WAIT.  Wait for 3 hours, check a glucose level, freak out (not everyone does this step), call the number, WAIT for someone to call you back.  Then HURRY UP and do the thing because you should have done it twenty minutes ago before you called.

Or WAIT, WAIT, WAIT three hours then check a level.  HURRY UP dinner needs to be done and on the table in fifteen minutes because we've already given the insulin and what do you mean we're out of grapes that is what we factored for fruit!

Or it is HURRY UP and send in your numbers to the team because they need to be in before 11 a.m. then WAIT for a response because you're sure something will be changed and yes it is changed, they want you to use a different ratio for lunch but lunch was twenty minutes ago.  Don't misunderstand, I LOVE the TEAM!  I don't know how long things have been this way but sending our numbers in and getting recommendations from our medical professionals is a gift and a blessing.  I don't know how they are making their adjustments to ratios and factors but however they are figuring those things out we are reaping all the benefit.  We are almost always within our target range and I have not made any decisions on my own about ratios and correction factors and how much long acting insulin my son needs.  This is a delicate thing and I am so thankful for the team who is keeping us at the right levels for my son to live his best life.  I'm just noticing that it is also part of the HURRY UP then WAIT pattern which may have a lot to do with my mental processing of this new situation; it may be my overwhelming desire to be in control.😉

We feel like we did a lot of WAIT in regards to a potential Continuous Glucose Monitor (CGM).  This device is worn for several days and sends glucose numbers to your device or iphone.  Depending on the device that is chosen you can have updated numbers every few minutes, use a program to track patterns, have the numbers sent to multiple devices.  These things are great and exciting and we knew we wanted one.  My T1D mom friend got one for her daughter and it was a game changer for how they were managing and how comfortable she was as a parent.  She could check numbers while her daughter was at a friends house or at school.  She could see patterns and make smart adjustments as she got more familiar.  She started to extend the time from when she gave insulin to when she gave food so that the two peaks would match up better keeping her daughter in range better.  We knew we wanted a CGM but WAIT WAIT WAIT our insurance doesn't cover these until 30 days after a diagnosis if you take good data in your book.  We took data (and would continue to do so even with the monitor) and we waited until we got to 30 days & we reached out to get the device.  HURRY UP they need a copy of this and a prescription from that.  So we hurried and got the right person with the right thing then WAIT again because from the time you ask for the device it can take 4-6 weeks to get all the right signatures and permissions and for the company to get the order and for the device to come to you.  No tracking number...we just have to WAIT. (but it is coming straight to our door so one day we'll come home to a nice surprise and then we'll be in the HURRY UP mode for a few hours probably).

I expect we'll find ourselves in a similar situation in a few months when we are ready for an insulin pump.  Right now we are in the WAIT period for that.  Our insurance requires that N have his diagnosis for six months before he can be considered for the insulin pump.  I get it.  We need to learn things the "old fashioned way".  Actually the way we are managing diabetes is relatively new.  Compared to even 20 years ago things are new.  Treating diabetes with insulin is new in the last hundred years and in the scheme of things that's not very long in medicine.  It's long for a human though.  We are learning to finger poke and check glucose, we are learning to look at that data for patterns and to make adjustments to keep those numbers in our target range, we are learning to dial up our insulin and give the injection, we are learning how N responds to all of these things.  We will need to be able to do these things proficiently even after we have a CGM and an insulin pump (if we get approved for those).  Technology doesn't always work, things break or accidentally get taken in a swimming pool or any number of scenarios and you have to use the "old fashioned way".  I'll be glad that we are proficient at the old fashioned way when we need it but I'll be glad to have the new innovative technology too.  I understand we have to WAIT and HURRY UP and WAIT some more.  There is a difference between understanding and being at peace with your knowledge though.  I'm anxious to keep making the best decisions for our son and it may not be as dire as we perceive it to be but we want to ensure our choices are giving him all the opportunities in life.  Good diabetes management is what we can aim for and advancing technology can help considerably.

It isn't easy to wait and in our age of instant gratification it is reminding us that we have patience and that things happen in their own way and their own time.  It isn't easy to hurry when you are tired and worn down and there are no vacations from diabetes management.  You can't just take a day off or sleep in on Sunday morning.  We're doing okay with it all.  N is thriving right now especially when we look back with our new 20/20 hindsight at how he was feeling in the weeks and month before his diagnosis.  HURRY UP...WAIT  of course we will continue to do both to the best of our ability for as long as it needs doing.  Thankfully we have a great team and strong supports and loving friends and family.

Our First Class Party

We didn't get much time to get accustomed to diabetes management before we had to face one of a T1D mom's worst days - classroom party day.  My son went back to school for five days before winter break.  Just in time for all the hot chocolate, sugar cookie making, handing out candy canes, and xmas class parties.  I seriously thought about keeping him home from school that last day before break because I had NO IDEA WHAT I WAS DOING with the diabetes management and his class was having a party where parents were providing: hot chocolate, cookies, brownies, cupcakes, candy, sugar cookies with a decorating station and a movie.

I met with the teacher and the nurse about a week before the party because we were establishing his health plan for school.  What to do for parties was part of the plan we developed.  The school nurse told me that there are usually three ways kids with T1D handled class parties:

1. they were opted out (parent would keep them home or they would go to a buddy class that wasn't having a party)
2. parents send in alternate "treats" that are diabetes friendly
3. child participates in the party and covers the carbs with an extra insulin injection  (calculates carbs and covers before the party or calculates and covers after eating the treats)

Since we'd been home from the hospital for only two days when I met with the school; I had no clue what to choose.  I wasn't going to opt him out because that seemed like it was only in my best interest.  I didn't believe I would be any good at baking alternate treats that would be friendly but figured I could try some recipes while he was at school and if they worked out then great.  So we decided he would just be a part of the party.  We'd been told that dosing fifteen minutes before eating was the best for N's management but it was going to be a challenge since it was parents providing the treats and we wouldn't know what was available until just before the party.  I talked it over with N and he understood that he should make a few choices at the party of things he REALLY REALLY WANTED instead of having some of everything.  The day of the party came and the nurse and I had come up with a list of carb counts for common treats.  N was going to choose his items then go get his insulin for those then return to the party and have the treats.  We were ready!

That's not how it went though.  At the party, parent volunteers were in charge of the treats.  They walked around to each student and offered them a cupcake/cookie/brownie/candy and then they put it on their plate.  N had to wait for six different parents to come around 1 at a time before he got the three items he wanted.  Then he went to the nurse.  There was a sick child in the nurses office so he waited.  Then he went in and one of the things he had picked was a brownie with frosting but it was definitely bigger than 1inch square which is how the carbs are factored so they decided together what they estimated the brownie would be.  The cookie had sprinkles and stuff, so again, an estimate.  He got his insulin and waited ten minutes then went back to the party.  Once he was back at he party he ate a cookie and then a parent volunteer told him it was time to put any snack he hadn't eaten into a plastic bag and put it in his backpack to take home; so he put his other two items away.  So he had insulin for three treats of carbs but only ate one.  He wasn't ready/able to advocate for his diabetes and couldn't try to explain to an unfamiliar adult that there could be serious consequences for him not eating these treats.  About half an hour later he felt sick and went to the nurse with low blood sugar (no surprise - he hadn't eaten 2/3 of the carbs he dosed for).  The nurse didn't know he hadn't been given time/opportunity to eat the treats so she was concerned that his blood sugar was so low.  She gave him a 15g juice and glucose tabs to bring him back up.  He then had to stay in the nurses office until she could check him again after fifteen minutes.  She wondered if he'd be able to ride the bus because she couldn't figure why he was low after eating so many carbs.

My poor kid.  He didn't enjoy the party much.  He didn't really get to eat the treats.  He had a scary low blood sugar that made him shaky and sick.  He had to sit in the nurses office for 30 minutes drinking juice and eating sugar tabs and rechecking his sugars every fifteen minutes worrying that he would be too low to ride the bus home.  When he got off the bus I asked how his day went and how the party was and he said it wasn't very good then he told me the whole story.  I felt terrible.  It hadn't worked out well for him at all and he hadn't had fun only extra worry and stress and nerves.  

We made a plan that next time he could eat what he wanted at the party then go to the nurse and tell her what he had to get insulin.  His blood sugar will spike with this plan and the insulin will come in later than we'd like to cover those carbs but the stress and fear will be removed from what should be an average childhood experience.  Valentine's Day is right around the corner so we'll get to try the whole stressful situation again in just a few weeks.  

So Many Alarms!

Before my son was diagnosed with type 1 diabetes I had one alarm on my phone to wake me every weekday morning.  Things are different now.  I have an alarm set on my phone for every three hours through the day and another for 3 a.m.  That early morning one is the one that is kicking my tail!  I'm TIRED.  In addition to the every three hours we also set alarms for fifteen or twenty minutes after an insulin injection to let us know when we can actually give the food.  This is usually set on the microwave so I can watch the time ticking away as I try to get the food prepared in the time I have.  It is amazing how many meals you can pretty much prepare in fifteen minutes.  Well, not prepare, but cook.  I usually do all the prep, cutting, seasoning, pouring into pots, getting ready.  Then we do the check, give the insulin, and turn on all the burners we need to frantically heat up all the things.  I know some T1D families that give their insulin and then give themselves 40-60 minutes before food is served but we're not there yet.

We've been on this routine since our stay in Children's Hospital and we haven't varied from it by more than about 20 minutes one way or another.  We left the hospital with the instructions to test blood sugar before each of his 3 main meals, and if he wanted an afternoon snack, and at bedtime, and between 1 and 3 in the morning depending on when we were giving the long-acting insulin.  N was super hungry for the first few weeks after his diagnosis so there was no sense trying to make it much further than 3 hours anyway.  Over our winter break from school he had his glucose checked at 8 a.m., 11 a.m, 2 p.m., 5 p.m., 8 p.m. and 3 a.m. and he pretty much ate something: 

every.single.time.we.checked.the.blood.sugar

YES, even at 3 in the morning!  For the first couple of weeks the team was adjusting doses and trying to decide what would work best for him.  For the first couple of weeks we didn't really know what we were doing and would respond to some of his numbers in ways that I wouldn't now.  What do I mean?  His target for nighttime is 150 but in the middle of the night he would dip down to 85 and I would give him juice.  It makes me giggle now because I was worried about how far he was from the target number but I wasn't really paying attention to the target range.  Nowadays if I get an 85 in the middle of the night I may offer him two crackers if I woke him up or I may let him sleep depending on how his numbers went throughout the day and what he had for a bedtime snack.  I typically only treat under 70 at night.  

In the beginning we were also correcting highs all day long.  Each time we'd check his blood sugar he'd be over 200 at first.  When he starting getting levels down in the low hundreds he even felt weird because he wasn't used to being in that range.  Nowadays we are usually between 90 and 140 at each check and we are considering ourselves lucky to be on a managed streak.  I know from our T1D friends that these streaks can disappear with no warning and without making any changes so we know things won't always be this easy.  We're thankful for the respite we are getting right now though.  I'm still checking every three hours and we always cover our carbs but we don't often have to make corrections and we aren't falling below 70 very often (once or twice a week at school usually).

Things are falling into a pattern in our daily routines and we are getting things figured out.  But yes, my alarm goes off ALL THE TIME.  Most of the time we don't really need the alarms.  We are almost always sitting down to dinner when that alarm goes off.  I have them set though so that I don't have to worry that I might not notice the time or that I might miss an injection.  I worry enough without checking the clock every few minutes.  It has taken some time for me to trust those alarms and trust myself but the past few nights I have fallen asleep easily and woken to the 3 a.m. alarm only to fall back asleep right after the glucose check.  That's a lot better than the first month when I was looking at the clock every thirty minutes all night long worried I wouldn't hear the alarm and then not being able to fall back to sleep after the 3 a.m. check because my brain would be too full.

I'm still a bit more worn down/tired than when I wasn't waking in the middle of the night but at least it is a brief waking and there is little stress involved in it for now.  I'll count my blessings.

First Month - UGH! THE NUMBERS!

We're past our first month now.  N was diagnosed in the wee hours of the morning on December 9th.  In some ways nothing has really changed and yet so much has changed.  We came home with our Pink Panther book and our new information and tried to create a new normalcy in our lives but some old information does get in the way.

When we were at Children's Hospital with our new diagnosis trying to soak in all the information we would need to take the best care of N, we were filled with the lessons we were learning and our thirty-forty years of life and stories and backstories of what we had known of diabetes.  I have a colleague that has type one diabetes but we never really talked about it.  In my twenties I was married to a man with type one diabetes and I remember he had rules he was following and little vials of insulin lived in our butter drawer in the fridge but I was young and he was guarded so I never learned much about it.

We were assured that our son can do anything he did before and he can eat anything he wants.  They tell you that, and maybe they really truly mean it, but it is difficult when there is a number attached to those food choices.  Higher carbs equals a higher number to dial on that insulin pen and as a parent I can't help but feeling sometimes that the number reflects my modeling of less than stellar meal planning and diet.  Before diabetes we were a family that liked fast food and take out.  We ate hamburgers and french fries.  When I felt like the family could use some bonding time I often used food to bring us together by baking cookies or making brownies or taking us all out for ice cream.  My kids grazed all day, open kitchen.  We usually ate dinner together but often I made multiple mini-meals catering to each person's preferences (not surprisingly I did not love cooking).

Our first few weeks after diagnosis I found myself thinking "he can't eat that, look at all those carbs."  When I'd dial more than five units of insulin into his pen I'd think "we can't do this meal again."  I'd heard our team of experts talking about food and how to not create eating and food issues for our children with T1D but it was hard to keep it in my head.  We like a popular take n bake pizza place.  We looked up the carbs and decided a splurge would be good for him to feel like not everything was changing.  Before diagnosis he was a picky eater who grazed all day long and now we were having him on a regular meal schedule and scheduled snack times.  I had found his appetite was different maybe because of the schedule but probably because the insulin we were giving was allowing his body to use his food the way it should.  We figured he'd eat two slices of pizza, he usually just ate one.  That night he ate four slices of pizza plus his fruit (no veggies).  Double the carbs we had covered for!  When he reached for that third slice I was panicking inside "do I tell him no? do we have to give him more insulin? what should I do?"  My hubby told me I handled it fine and N never realized I was worrying.  After he doubled his meal we did decide he had to have additional insulin because each slice of that pizza was 25g of carbs and we'd covered for 50 when we needed to cover 100!!!  That number and those insulin doses caused me stress and uncertainty.

My coworker's daughter was diagnosed T1 a year and a half before our son.  She struggled with it at first but over time it has become a part of her everyday life and she seems to be handling it all so well.  I'm so fortunate that she has traveled this road ahead of me as she is now a great resource and a great comfort when I'm uncertain and confused.  I'm definitely not afraid to cry in front of her.  After I'd been home for a few weeks she came over and we shared some of our stories.  Not surprisingly, our reaction to the diagnosis of each of our children was filtered through our previous experiences and what we had known before and what we were learning now.  I told her about the pizza and she laughed.  Her family likes pizza too.  Her daughter likes chocolate muffins and chocolate milk.  Both our kids like treats and gummy fruit and things that have higher carbs.

As the days and weeks have gone by I am happy to say that I'm getting more comfortable with our numbers and my role in providing N with nutritious options.  We are still a family that likes hamburgers and fries, pizza, and take out but we try to make smart substitutions when we can.  We were given targets for the number of carbs N should have at each of his meal and snack times and we try to stay in those ranges without presenting entire meals he won't touch.  We substitute thin crust pizza from our favorite place instead of the regular crust and he still eats four slices but with the thinner crust it is a lower carb (still our highest carb meal each week though).

I'm also changing the way we approach our main meal.  No longer am I the short order cook of the family.  I make a meal and try to ensure there is one food that each person will eat as part of that.  Thankfully my teenager's tastes have really branched out over the years and he is willing to give just about anything a try.  As for N, he prefers known foods and for his foods to be pure/separate.  He doesn't like casseroles or mixed foods.  We put a veggie tray, salad, or vegetable on the table for every meal but, under our care team's advice, we don't force anyone to eat anything.  We just make sure healthy options are being served and people are modeling eating them.  Tonight we are about to have burgers, fries, acorn squash, veggie tray, and lemonade for dinner.  I can't say I've started LOVING cooking but I am starting to gain confidence in dinner and I can see that I may even start enjoying cooking in the future.  Hubby and I are now creating dinner together which offers more visiting and bonding for us too.  There are definitely perks.

Those numbers are still always on my mind. I still worry about the numbers and if we are doing the right things.  I worry that 40g of carbs from a burger is not the same as 40g of carbs from fruits and veggies.  No one in my family seems to like any veggies (including me).  We keep serving up healthy foods, the adults keep eating the healthy foods (even when we'd rather have cake), and we keep making small yet sustainable changes from white to wheat, from thick to thin, from fried to baked.

I'm hopeful that by the time N is an adult he will have some healthier habits with his eating.  I'm noticing a lot of joy at our dinner table and it is nice to have ten minutes of family bonding time.

I'm not kidding, it takes 30-60 minutes to make food and they sit at that table for about ten minutes.

Things are different now but not so very different.  There are some positives if I pay attention to them.  We can do this!