Saturday, February 29, 2020

Still Waiting...CGM

We were eligible for a continuous glucose monitor 30 days post diagnosis...supposedly.  We took our data and learned our new skills and at our one month follow up appointment we talked to our team about getting a CGM.  They agreed that we were ready, our son was ready but we were two days shy of 30 so we left that visit with instructions for how to get "started" on the process of getting the monitor.

N was diagnosed in early December and tomorrow it will be March...we are still waiting.  No CGM yet.  Nope. Just waiting. And waiting. And waiting.

I know the CGM won't solve his diabetes but I believe it will improve the quality of care we are providing.  I believe we can keep him in range better with the information provided.  I also believe it will give us some peace of mind.  The CGM can alarm for us if he is out of range.  This would be a huge help, especially in the middle of the night.

N wants to go play with his friends in the neighborhood and right now we make them all stay near our house. We make sure he is well in range before he goes outside and we check him every two hours when he is playing outside with his friends.  He gets rather tired of us showing up too.  Especially when they are jumping on the trampoline and he has to stop to get his finger poked.

It would also help at school.  Right now he has his blood sugar checked at 7:15 in the morning.  He then checks it twice at school; before lunch and 30 minutes before he gets on the bus (allowing them time to treat a low and still get to go home).  You know when he doesn't check is blood sugar at school?  After PE or after recesses.  Not a huge deal but N is typically treating a low 1-2 times per week at school on PE days.  Our school nurse is fabulous and handles these with ease helping him to learn how to handle these himself and how to keep calm.  We are working together to adjust breakfast and lunch on PE days.  We've lowered his lunch insulin and increased his breakfast carbs but we haven't got it completely worked out yet.  If we were receiving the CGM data we would see how his body is reacting to the exercise and would be better equipped.  Maybe he needs a snack right before PE or right after...hard to know right now...not enough information.  We just know he is often low in the afternoon on PE days and sometimes he is low at lunch on PE days.

We're fortunate because N can identify when he feels low pretty consistently.  He is almost always the one who alerts us to his low.  It is extremely rare for us to do a scheduled BG and find it low.  We find it low because he comes to us and says he feels shaky and he thinks he is low.

We are scripted for a Dexcom 6 from our endocrinologist but our insurance company has us going through their preferred supply company rather than directly from Dexcom.  I got a text message from the medical supply company over a week ago saying they had our paperwork and would be calling us soon.  To me, soon should be within 2 days but to a big medical supply company I have no way of knowing what "soon" means.  I do know that I'm back to waiting.  Waiting for a call.  I assume it will be more waiting after that because then they will be shipping the monitor.  Hopefully we have it in the next couple of weeks. 

Saturday, February 22, 2020

They Mean Well

People, especially "friend"  people, have the best intentions.  They want to support and to help.  They want to listen and empathize.  They want to make sure that you are heard and held when you need to be.  But, they don't really understand just as I don't really understand their struggles.  We do our best for those we love but truthfully you must be walking the same path to understand.  It's important to get a friend or two who walks the same or similar path to yours for sharing the highs with but also for when you are weak and tired and overwhelmed and struggling and you just don't know how much more you can do, take, handle.

I'm tired this week.  My job is emotionally demanding.  The students I work with have significant needs and multiple disabilities.  To provide them with a free and appropriate education I work with and manage five staff members directly (my team) and coordinate programs with six general education teachers and four specialists.  I have to put my teaching on luke-warm some days.  I'm not sleeping much.  I'm worn down from the lack of sleep and the fact that I'm no spring chicken.  I've let my team know that I appreciate their grace right now and acceptance that some days I am doing just enough at work but not nearly as much as is typical for me.  They are carrying the weight and I'm just steering the ship some days. 

The wonderful friends in my life ask how I am and I tell them "just tired" or "a little worn out".  I never want to burden others.  I can handle things.  When I tell them about it they don't really get it anyway.  They think to themselves waking up at 3 a.m. would be hard but they don't feel how it feels to do this night after night.  I don't want to be the person who can only talk about the chronic health needs of my family.  I want to ask them about their families and how their weekend was but I can't hardly listen to their answers because some days my mind is so fuzzy.  This too shall pass.  I know a year from now I will barely remember the struggles of now.  I will be with all new struggles and these ones will have faded away. 

People who aren't close with me, "work friends", or casual friends, they mean well.  They ask how you are and they wouldn't object to you telling them you aren't holding it all together but they are equally happy to accept the "I'm fine" even when you say it through clenched teeth or with eyes too bright as you fight not to cry.  When you don't remind them, they forget that you are doing this T1D thing every day, every hour, every minute.  They don't realize that you now have a set of responsibilities that manifests at a rate similar to caring for a newborn.  They tell you about their hiking trip and ask if you did anything fun this weekend.

  Hmmm well I checked blood sugar and managed to pull my son back from some shockingly low numbers into a range that is safe for him.  I stood outside his bedroom and watched to make sure he was just sleeping and not struggling to survive only to read on his monitor that his blood sugar was too low to sustain life much longer.  I watched episodes of cartoons at 1 a.m. with him as he ate gummy bears and drank juice boxes because the episodes are fifteen minutes long and would cue us both when we could check that glucose level again and see if we'd finally made it back into range and were safe to fall back to sleep.  Um ...

"My weekend was great, thanks for asking".

I'm fortunate that my team at work has been through this before.  Our co-worker's daughter was diagnosed almost two years ago and I was the one trying to fathom her exhaustion and frustration.  Her difficulty with insurance companies and the number of appointments she had to add to her months and year.  I was there when she would arrive at work with tears in her eyes or when her phone would ring and she would see it was her daughter's school calling.  I was there when she'd grab her keys and say "i'm sorry" as I would respond "take care of your family, we've got this".  But I couldn't really help and I didn't really understand.  I'm the fortunate one.  I have her and she does understand and she's been there before.  She can probably listen to me talk about health incessantly forever.   When I tell her about a crazy high or an unexpected low, she has stories to tell back and we can be together.  When I get a text message from the medical supply company that they have received our information for a glucose monitor she understands why I'm crying.  I have her and all our other team members who supported her and we're just all doing it again, same dance new partner.  I'm fortunate in this.  But sometimes it doesn't even matter.  You can only push yourself so much and some days you want to throw the blanket over your head and sleep but you only get 3 hours at a time. 

Find yourself a person or people who have walked the similar path.  They can carry you for a short distance once in a while.  Just far enough that you don't break or quit; you can't even if you want to so find some support.  They all mean well but find someone who understands.  And buy them coffee once in a while to show your appreciation­čśĆ

Monday, February 17, 2020

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:)

Monday, February 10, 2020

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. 

Thursday, February 6, 2020

Unexpected Good

My friend at work has a daughter with diabetes.  She was diagnosed a year and half before my son at about the same age he is now.  I wish my friend didn't have to be a T1D Mom and I wish her daughter didn't have T1D just like I wish my son and I weren't doing this.  But...

I try to find the good.  I try to celebrate small successes and appreciate what I have.  Where I live, how I've lived and live, the fortunate life I have, my family, my house, the comforts I have.  I try to find the good.  I think most people do.  I think we humans may be predisposed to both complain and make the most of.

I was reading other blogs and looking at recipes and finding resources when I came across a survey question.  I wish I could figure out where it was and direct others there but no matter.  The question was something to the effect of: since you now have a child with type 1 diabetes, have you found any unexpected good/positive?


If you choose to look for the good you will find it.  Maybe you won't find it in every moment and maybe there will be vast amounts of time when it is too difficult to look for the good but ultimately I think it is there.

Unexpected good:

1. There are more kisses, hugs, and cuddles with my ten year old now.  He and I talked about this because he had almost "outgrown" most physical affection (yuck mom) but now that he has diabetes he feels like it is okay for him to accept and enjoy extra "love".  He said "other kids won't think its weird because I have to have shots and they will think I need hugs for that."  :)

2. We are appreciative of our family time and the simple acts of being a family.  This is probably related to the hospital visit and fear and will fade again over time but right now we are all feeling the joy of family (even my teenager).

3. I'm a terrible cook but my kids are trying to tell me something I did right at each meal.  I suspect hubby had a chat with them about it but I don't care, I'm happy to have any positive feedback.

4. I have given myself permission to leave more of my work at work and to focus my home time on being home.  I'm a teacher so bringing work home is pretty common but I am taking less home time for work right now and focusing more of my attention on being in the moments of each day including focusing on home while I am at home.

5.  When we opened up to friends and family about our son's new diagnosis we found out that we have lots of friends with type 1 diabetes.  Apparently it isn't something you brag about or talk much about unless you find out someone else can truly understand and then you are immediately bonded in a new way.

I'm hoping to come back to this post over time and add to this list but hubby asked if I would watch TV with him and so here I go to focus my time and attention on the family that wants to spend time with me right now.  Good.

Wednesday, February 5, 2020

The 3 a.m. Club!

Yes, I admit it.  I'm a member of a club.  The 3 a.m. club!  We have the best parties...just kidding.  I am one of so many family members and caregivers who wake up in the middle of the night to check the blood sugar level of a (hopefully sleeping) diabetic relative.

This isn't a club I purposely joined or ever really wanted to be a part of and yet there I am in the wee hours of the morning padding softly down the hallway trying not to wake anyone (especially not the dog who sometimes decides he needs to be let out to sniff around the yard for half an hour).

I sneak quietly into my son's room and attempt to poke him with a lancet and draw blood without waking him.  I'm pretty good at it now too.  He almost never wakes up.  Or at least he pretends he doesn't wake up.  His numbers at 3 a.m. have been right on target for almost three weeks now and hopefully I don't jinx it with this post.

Some people stay members of this club for years.  Some are told that they can take a break from membership but can't bring themselves to do it.  Others do take a hiatus but that is usually all it is.  If you are helping manage someone's type 1 diabetes you will be awake in the middle of the night at some point for blood sugar checking/management.

I'm currently in the club under a physician's direction.  If/when I am told I can take a break I'm not sure what I will do.  I know some parents that take the break and just feel thankful to be sleeping through the night.  I know other parents who are given the option of a break but can't sleep without checking.  I've recently been talking with a friend who is in the club for herself and despite having a continuous glucose monitor with alarms and a couple of friends that also receive alarms for her, she still wakes up between 2 and 3 a.m. every night because she is just so accustomed to needing to that she can't help it.

When I first joined this club right after my son's diagnosis, it was very stressful.  I didn't know what I was doing, I didn't feel confident in my responses to his numbers, and I was often awake for long periods of the night.  I would wake frequently and check the clock over and over again fearful that I would miss the alarm.  After checking I would have a lot of trouble falling back to sleep with my mind racing.  I've settled into it some now.  I trust the alarm will wake me so I don't check the clock even when I wake in the middle of the night.  After a check I can usually fall back asleep within an hour...sometimes I have to just count my breath 1 in 2 out over and over again to quiet the mind but most of the time I'm asleep again within the hour.  This isn't a club I really want to be part of but I'm thankful too because a lot of families have joined other clubs that don't have as positive outcomes as my club.  My son will likely have a long and full life and the price for that is waking in the middle of the night - WORTH IT!

Monday, February 3, 2020

What's for Dinner

I don't enjoy cooking.  I've never really liked cooking.  I like baking!  I like baking breads and desserts.  We don't really need me to be baking breads and desserts though and we do need to have balanced meals (ugh cooking).

We ate out a lot before N was diagnosed with diabetes.  We had dinners in sometimes but it was always so much effort.  Each person in the family has different preferences and I remember as a child being forced to eat and clean your plate.  I was a sneaky child about food.  I'd hide food in my pockets and flush it down the toilet.  I'd hide food on a ledge under the table.  I'd sneak food from my plate to the plates of those nearest me.  I would cry and carry on when forced to eat and there were several times when I actually would vomit.  I was HORRIBLE!  It isn't the flavor of food that is difficult for me; it is the way foods feel in your mouth that cause the gagging reaction.  I don't know if I had been raised by other parents that I would be any different now.  I have a very strong sense of smell and very easy gag reflex for textures in my mouth.  As a parent, I never wanted to make the food battles that had been part of my miserable dinner time experiences.  I made all new problems instead:)

I have two sons.  Pretty much whatever one likes to eat the other one doesn't much care for.  My older son doesn't like cheese but my younger son eats all kinds of cheese.  The older son likes several vegetables but the younger only eats fruits.  The types of fruit one brother likes the other brother doesn't care for.  They both like chicken strips but the kind of seasoning they like is very different.  One son likes spicy foods and the other thinks spices are too much.  Serving a meal that I think everyone will eat is not very likely at this point but you have to start somewhere.  I know that we didn't have a very healthy diet but that wasn't a big deal to me.  I figured that wasn't uncommon in families.  It is important to have a healthy diet but when the ramifications of eating the way we did were years and years off it was hard to make this a priority.  With type 1 diabetes in the family the ramifications of an unhealthy diet are NOW, right now in your blood glucose reading.  So we will all be switching to a healthier diet but how and where to start. 

Thankfully we have the help of a nutritionist and dietitian.  I know my goal right now is to get us on a regular schedule for meals and snacks and to make sure that healthy options are served and someone is modeling eating those foods.  It doesn't make the responsibility of cooking any more fun or easier.  The first couple weeks we were home I was so overwhelmed with the food.  I'd cook for an hour trying to make a healthy meal and in five minutes everyone would be "done" having eaten almost no food at all.  Little payout for a lot of effort.  As the time has gone on and we are six weeks post diagnosis I can see things starting to get easier.  So where to start?

First, I made a list of the foods that all of us eat.  Not what I thought would be best but do we actually all eat.  It was a short list: pizza, chicken strips/nuggets, waffles/pancakes, steak, french fries, crackers, chips, dinner rolls.  That was it.  Each individual person eats a lot more than these few items but these were the only things on everyone's list. I started there.  Chicken strip night, pizza night, steak night, breakfast night - four days of dinner options. 

Next, I started rounding those meals out.  I added a vegetable tray and fruit to every dinner.  There is always a veggie tray and some fruit on the table ALWAYS.  I also started making some substitutions to these meals.

For our chicken nuggets - I traded frozen chicken strips for trying some recipes for chicken strips using chicken breasts.  At first I would serve both the familiar and new but now I just serve the new chicken strips.  I found a recipe that we can all eat with varying levels of satisfaction and I make adjustments to it each week hoping that some day it will be about perfect.  The frozen french fries have been traded for home made fries & home made sweet potato fries (the kids are willing to eat one sweet potato fry each time I make them but they mostly eat the regular fries).  I borrowed an air fryer from a family member and cook this whole meal in it. 

Pizza night hasn't been adjusted much as we get it from a take n bake place.  We've switched to the thin crust and no longer get breadsticks or desserts.  Instead we have pizza, veggie tray, fruit, and a sugar free popsicle for dessert. 

Steak is like the chicken strips.  I keep trying variations of recipes looking for the best fit.  Everyone likes a seasoned steak from the grill so that is once a week now.  Since this one is easy it is usually the night we get more creative with vegetables.  We've tried sweet potato, acorn squash, steamed broccoli, steamed cauliflower, roasted carrots, roasted peppers & onions, corn, green beans, artichoke, and hummus.  None of those were big hits but we'll try them all again in a rotation until something sticks. 

I've also tried skillet and sheet pan cooking for steaks and with some teriyaki sauce we were able to add a meal.  Teriyaki steak (or chicken because everyone will eat either) with rice or noodles.  Again we try some veggies with this meal since the rest of the meal is pretty much working for everyone.  I've made the rice fried with onion, peas, and carrots.  N doesn't like fried rice because he doesn't like mixed foods.  We also tried zucchini with this without much success but I liked it.  Our whole family likes going out to a hibachi grill so I'm continuing to try recipes of this style.

Breakfast for dinner is hit or miss.  One child likes waffles and the other likes pancakes but neither is ideal.  I was hoping to use those to get more eggs introduced.  Both kids like bacon so that is easy for this meal.  I've adjusted the batter so it is a homemade with lower carbs than the mixes but otherwise this isn't my favorite meal to make and no one is really loving this for dinner.  As we find other things we'll probably take this out of rotation.

Crackers, chips, dinner rolls - that isn't really a meal and it isn't even the base for a meal.  Most of these things we are basically limiting.  Our teenager has access to chips but N is off chips and rolls for now.  He takes wheat thins in his lunch most days with meat and cheese for school so he gets his cracker fix.

What else have we tried: shepherd's pie, tacos, fajitas, pot roast, beef stew, chili, chicken casserole (several), pork chops and the list goes on.  The most difficult part for me is that there is so little that everyone will eat.  There is not a single meal I can put on the table and think "everyone will have some of everything on the table" NOPE.  But I can think "we all sit at the table" and "everyone has something on the table he/she will eat".  I can see that things will change if I keep at it.  My older son used to have a single bit of dinner then make himself peanut butter toast - now he just eats enough dinner to not need toast.  My younger son will try the main dishes for dinner but we are still allowing him the neutral alternate - wheat pita with cheese or pepperoni pita depending on how many times he has tried the main meal (first time we allow for the pizza since he never likes anything on a first try but once he has started to eat a dinner option we start fading out that pizza to pita with cheese and ultimately plan to fade the alternate entirely).  It is hard since we know he needs to eat and carbs are part of what he needs to have.  We know there are better carbs and not as great carbs but we just keep doing the best we can.

I'm looking forward to the day when I read back through these posts and realize that things are much different with foods.  Right now I'm tired of thinking about dinner and trying to figure out what to make. 

Sunday, February 2, 2020

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.

Saturday, February 1, 2020

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.­čśë

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.