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...

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.

It's finally here! The Dexcom G6!

It finally happened.  Our son's Dexcom G6 was approved by insurance and was overnight delivered to us yesterday.  So much excitement for this very expensive new piece of equipment.  We paid our entire out of pocket maximum and deductible for this one device but we are thrilled and believe it will definitely be worth it.

Since this is our first ever continuous glucose monitor we are very unfamiliar with how previous models worked before.  The only thing to compare it to is the finger pokes every three hours we've been doing and I am not going to miss those. With the G6 we don't need to do calibrations or finger pokes to check numbers before treating.  So we read up and watched a video or two yesterday.

This morning we did a finger poke & bolus for breakfast then we were ready to give it a try.  My son was VERY nervous anticipating that it would hurt or be uncomfortable and I was super nervous for him knowing that if it did hurt or was uncomfortable it wouldn't change the fact that CGM use is better at helping manage diabetes.

I sat him in front of the TV and distracted him with a show he likes.  I took my time and prepped the site.  I re-read the instructions, with pictures, provided with the inserter then placed it on him.  I was very nervous to push the button but he didn't want a count down so I took a deep breath and pressed.

"Uh was that it?" my son asked.

I was so happy.  He said it didn't really feel like anything.  He said it felt "like a flutter".  Two hours of warm up later and we were on.  The monitor takes readings every few minutes and starts a little chart/graph so we can see if we are in range, low, or high.  We were in range and had an hour before lunch and so back to his own entertainments he went.

Now today, of all days, dearest hubby decided he would bring home donuts from the grocery store.  He figured our son could have one with his lunch cover.  Not plain donuts, or small donuts, but a super fluffy, frosting covered, sprinkled donut.  I looked it up as best I could and figured it was between 40-60 carbs depending on what site I looked at.  So we bolus for 40g plus lunch figuring a high blood sugar later was better than low.

Here's where the dexcom is going to help us manage things.

Before, I would've checked his BG at 2:15 (snack time at school but at home he doesn't really eat a snack at this time usually).  I then would've checked before dinner at 5ish.  I looked at his number at 2:15 and his BG was 119.  In range, but surprising because I figured I had not covered all of that massive donut.  Interesting but okay.  We refilled his water and chatted a bit then off to chores I went.

At 2:30 he came out with the sensor and said it alarmed and his BG was 182.  That is out of range but he had his last insulin at 11:00 so I figure his lunch wasn't fully out but the insulin from 3 hours previous had done all it could.  We double checked our CGM with a finger poke and it was high too.  I had him drink a glass of water and said we'd look in about fifteen minutes; if it was still high we'd do a correction.  So at 2:40 he was up to 256 and we corrected with insulin.  He stayed out of range for the next few hours.  His pre-dinner number was 290!!!

Normally I wouldn't have caught the high until the 5:00 dinner.  I wouldn't have given the correction at 2:40 and who knows how much higher he would have been by dinner.  I would've had to recheck his after dinner with a finger poke but because of the CGM we just checked every twenty minutes until it started to get back into range.  By 5:45 he was back in range and had finished eating.

No surprise what happened next.  At 7:30 he had another alarm but this time it was low and dropping rapidly.  We gave 15g of juice.  So NICE not to have to finger poke for that or again fifteen minutes later...checked the CGM we were back in range at 98 with a steady arrow.  Checked again fifteen minutes later still in range holding steady.

So what do I think.  I LOVE the dexcom already.  I HATE donuts.
(Okay fine, I like donuts but I think maybe they are not worth it.)

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.

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. 

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 appreciation😏

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. 

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?

YES, YES, YES

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.

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!

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!

From Emergency to Children's Hospital

We got N's diagnosis on a Sunday morning at about 1 a.m. in our local emergency room.  Things moved pretty quickly from there.  Our hospital often transports pediatric patients to a larger city Children's Hospital about two hours away.  The emergency room doctor gave me the diagnosis and told me what they were doing to treat my son who was in diabetic ketoacidosis (DKA).  DKA is a life-threatening problem that occurs when the body starts breaking down fat too quickly because the insulin isn't there or isn't doing it's job; the liver responds by turning the fat into ketones which causes the blood to become acidic.  The breathing my son was doing was his body's attempt to bring down his acidity.  They were treating him with IV fluids and insulin and were already coordinating with the Children's Hospital to transfer him.  Our ER doctor warned me that he would go to the Intensive Care Unit (ICU) at first because of the DKA.  The weather that night was super windy and rainy and they were concerned the ambulance would take too long and possibly get stuck in traffic so a helicopter was coming to pick him up.

Things settled down in the room we were in and I had a chance to give my son a hug and stroke his hair.  My ten-year-old doesn't usually like these displays of affection in public but he didn't seem to mind that night.  I told him we knew what was wrong and we were going to be able to get him feeling better over the next couple of days and that he was in good hands and could sleep if he wanted.  He was out a few minutes later.  A nurse hugged me and told me she was sorry all this was happening and that my son has diabetes but I just told her thank you because I knew the problem and I knew we could work with it.  We can't cure type 1 diabetes (yet) but I'd had a friend with type 1 in my twenties and his life had seemed to be going pretty well so I knew we could work it out.

So, the helicopter is small and is set up as a self-contained emergency room.  When the crew arrived to pick my son up they wanted to weigh me to see if I could go with him.  I needed to be under 150lbs...I didn't bother to get on the scale but I did chuckle and thank them for their grace.  N went in the helicopter and my husband and I drove the two hours to the new hospital.  My sister, who had taken us to the ER, went back to my house to break the news to my sixteen-year-old when he woke for school.

When we got to N's new hospital room (ICU) he had just barely arrived and they still had the gurney next to his bed.  There were so many people in there that we weren't sure who to talk to.  My sister is a nurse, my mother is a nurse, and several others in my extended family are nurses so I always look to them.  Our ICU nurse was wonderful.  She made sure I knew what was happening at every step and my training to be a type 1 diabetes mom started the moment I arrived in that room.  She told me everything she was doing and why she was doing it and under what circumstances I would be doing it too.  I didn't sleep much in the 3 days we were in the hospital but I learned a lot.  We were at Children's Hospital Monday morning (3 a.m.) and we went home Wednesday afternoon (1 pm).  In that time we met with an endocrinologist, a dietitian, a nutritionist, a counselor, and someone (I don't know what his title was) who explained all our supplies to us.  We learned about counting carbs, calculating insulin to cover, how to correct for lows and highs, sick day management, how to check blood glucose levels, and how to give insulin injections.  We gave our first insulin injections to our son under the supervision and coaching of the nursing staff.

The best part about being in the hospital was having experts around all the time helping us to learn our new skills.   We were anxious to get home though since our teenager was home alone, we were far from family and support systems, we weren't able to sleep very well, and my son was tired of eating his food cold.  We would order his meals then have to wait for them to arrive in his room before giving his insulin since sometimes the kitchen would get behind and ordered food could take up to an hour to arrive.  He'd then have to wait 15 minutes before he could eat.

We left the hospital on Wednesday afternoon with hundreds of dollars in diabetes supplies and our new worries and anxieties.  Thankfully I am a teacher and we were a little more than a week from our winter break so I made arrangements to take those days off to meet with my son's school and to get our house in order for our new life with a child with type 1 diabetes.

N was so happy to be home.  He was also uncertain about what his new diagnosis meant for him.  He needed encouragement to get back into his familiar routines and activities.  The first afternoon home he wasn't even sure if he could be in his bedroom by himself.  That night when I tucked him into bed I was so relieved; he was so much better than just a few days before.  The last time I had tucked him into his bed I'd been so worried and uncertain.  This time I was anxious for my new role as a T1D mom but happy to have him home and healthy.  A few hours later, as I did his 3 a.m. blood glucose check for the first time at our home I realized I'd left all our expert support behind at the hospital and I was now expected to know the answers.  Thankfully our team at Children's Hospital had given us the Pink Panther book and phone numbers to call and call we did.

Diagnosis Story

It started on a December Sunday when my 10-year-old son returned from a weekend visit with his dad.  He hadn't felt well over the weekend and had spent most of the time watching television from a couch.  Usually he and his dad spend time outdoors so this was unusual for him.  I kept an eye on him but he just seemed a little off so the next morning he went off to school.

Two hours into the school day and I get a call that N isn't feeling well.  No fever but complaining of stomach pain.  I pick him up ten minutes later and we take the rest of the day off.  No symptoms all day.  He seemed fine but just a bit tired.  I keep him home Tuesday just to be safe but again, no symptoms.  Wednesday he is back at school.

Right about lunchtime I get the call from the school again that N is in the office not feeling well.  He NEVER goes to the nurse so she is concerned.  We talked a bit about his lack of symptoms and fever but I decide to take him home.  The rest of the day he hangs on the couch watching television.  No fever, no stomach issues, just tired.  Thursday the vomiting began after eating and I though, "well, there's the flu".  I call the pediatrician and get the symptoms for this year's illness and sure enough it matches: tired for several days then vomiting some with fevers and some without.  I'm told to watch for dehydration and come in if he isn't better in a day or two.  Thursday and Friday he has times of tired and times of seeming like he is on the mend.  The vomiting was infrequent (3 times throughout the day) and we haven't seen it since Thursday so I figure we're on the right path.

Saturday night he comes to find me after his bedtime to say he can't sleep.  His breathing has changed to an audible breath and my level of unease goes shooting up.  I spend the night on the trundle bed in his room.

Sunday morning I call the pediatrician to come in but they can't see us until the afternoon.  I was so uneasy with the look of him, the sound of his breathing, and by this point he was having trouble with his balance when walking.  So we decide to take him into the urgent care clinic rather than wait for the appointment.  At urgent care they draw blood (no easy task because he is dehydrated) and check him over.  Their lab isn't open weekends so we are sent home with a prescription for some antibiotics for a possible sinus infection (because of the breathing which is now pretty forceful blowing out through his nose) and told to keep him on fluids like pedialyte or gatorade to rehydrate.  They say they'll call us if they find anything in the blood work but without a fever they are sure it isn't flu.  We cancel the pediatrician, pick up the meds and fluids, and spend the rest of the day pushing those fluids and some mild foods like toast and banana.

Sunday night I hunker down on the trundle bed again but I'm not sleeping at all listening to his breathing.  It is getting worse.  I've already decided by ten p.m. that we are going into the pediatrician in the morning.  N is sleeping fitfully and complaining that he can't sleep because his ribs hurt (probably from the forceful breathing).  In the middle of the night, I move him to the recliner in the living room to see if I can get him more comfortable.  As he tries to sleep I'm just watching him and feeling overwhelmed.  I finally called my sister who lives nearby; she's a labor and delivery nurse so I knew she wouldn't panic or overreact and I thought maybe she would come over and make me feel less worried.  She doesn't live far away so she showed up a little after midnight.  She took one look at N and said "get in the car, we're going to the emergency room".  She sped the whole way!

We pulled N from the car and went directly to the emergency room desk where I finally lost it.  Tears streaming down my face I said "my son can't breath and I don't know what to do". Those people in the emergency room...they are quick, efficient, and amazing. I am completely grateful for their quick and supportive care of my son.  Into a wheelchair he went, pulse oxygen monitor on his finger said he was getting plenty of oxygen and we're taken back to a triage room.  He's moved into a bed.  Many, many people were bustling around hooking up this and monitoring that but one nurse took a moment to let me know he was in good hands and they would work it out.  It was less than ten minutes from when we arrived in the ER to when the doctor came in to tell me "we know what's going on and this is going to work out fine...your son has type 1 diabetes."  then he smiled at me and said "I bet you didn't know that."   Well no, I didn't know that, but as soon as I heard it I felt relieved.  I know everyone who gets this diagnosis for their child feels differently but in that moment all I felt was grateful that we knew what was going on and that type 1 diabetes is completely treatable and people who have T1 can live long and happy lives.  Isn't that all we want for our children?