Baby...It's COLD

FIRST POST FROM MY REVIVED GREEN MACHINE...THIS MAKES ME VERY HAPPY!

This is what I woke up to this morning.  It is cold outside.  The weatherman had been predicting....I was hoping he would be wrong.  But when I opened the door to put the dogs out and the ice fog came rolling in our living room, I wondered.  When the cold hit our dogs in the face and they faltered before stepping onto the front porch, I suspected and when I opened the door to let them back in a few seconds later and saw that they had done their business on the porch...I knew.  Lovely.  It's a good thing I love those little stinkerbutts.  I grabbed my iphone as I went on the front porch to clean up their present for me and grabbed these pictures for you.

We haven't seen 50 below for a few years here...not that I miss it.  But there is also an eerie beauty that comes with those temps.  Best viewed from inside the house no doubt.  And I am so glad today is not a work day, because there are no shut downs up here for extreme temperatures, life goes on.  Really glad my life is going on from inside my house today.  :)

~B

Warm Hearts

The weatherman says we should expect temps to reach 50 below zero this evening.  As long as I have lived here, this number still fills me with dread.  Ugh.  I am so over winter and all that comes with it.  I am ready for summer and sunshine, heat to warm my cold bones and permeate my soul.  We are heading that direction.  Yesterday as I was closing the shades at work at 3:55, I noticed that it was light and a flicker of hope took hold.  December 22 is the solstice and it is a much celebrated day in our household.  That is the day we turn the corner and start gaining seconds and then minutes to our day.  By June we will have 20+ hours of sun....ooh I long for those days.  For now I just have to content myself knowing that we are slowly creeping towards that.

Tonight on my way home from work, I will stop at the store to pick up the few groceries that we need and then we plan to hunker down for the weekend and relax, and get some much needed rest.  There is a plan in place for a late night snack for Seth so that his number will sustain him through the night so he can sleep in.  He has asked for this and our weary bodies agree...we need this.  We are going off the hospitals schedule {GASP} and doing what our family needs this weekend, recovering.  I am counting the hours until I get off work, I am on lunch now...3 more hours to go.

Yesterday when I returned to work, I had a package from someone who is becoming a dear friend to me.  It has been interesting to see who has pulled closer in this challenge.  Anyway, my friend {J} had sent me a care package at work.  I was so touched at her thoughtful gifts:  A cuddly teddy bear, a bag of hugs (cause everyone needs a hug) and 2 diabetic cookbooks to help us with meal planning.  One of the cookbooks is by Better Homes and Gardens and in ginormous bold print on the edge of each page is the carb count per serving...I LOVE THIS..  Seth was so excited when I brought it home last night.  He immediately picked out a few recipes to try this weekend.  The other cookbook is all deserts, so we also have a few cookie recipes to try out too.

I also want to shout out to another family that has been amazing...the {D} family.  Quite simply...I love this family.  Every.single.one.of.them.  {T} was the first person I called upon diagnosis, because she is amazing and a friend and because I knew her sister {T} has this condition and lives an incredible life.   AK {T} called and texted me every day in the hospital, she spoke with her sister in AZ who emailed me blog links and links to diabetes sites, that have been invaluable lifelines to me so far.  AZ {T} has offered support and assured me she is a phone call or an email away if I have any questions, she has reminded me of things I learned in the hospital but are in the recesses of my foggy mind.  And then there is AK {T's} husband also a {T} (all the T's get confusing, just know that every single one of them is a selfless example of love and service and  if they are in your life, you are richly blessed).  Anyway, right before Christmas, my beloved lime green laptop crashed.  I was devastated.  I had a senior photo session that I still needed to edit, and I don't watch a lot of TV, I edit my pictures, digital scrapbook and surf.  I was devastated.

After I got through the urgency of Seth's diagnoses, I emailed my friend {T} to ask her to have her husband {T} give me a quote for fixing my computer.  He said if I could get it to him that weekend he would take it to work with him that week and let me know what was up.  Turns out, my dead battery had blown my power cord (I was thinking it was my motherboard which would equal an expensive fix), but there were a few other issues and since he had it, he would just get everything running smoothly for me again and return it the following (today!) weekend.  So, I promptly ordered a new power cord and 9 cell battery and am waiting to pick up my baby.  How incredibly kind of him to get me up and running again.

I have been so touched by people (both friends and strangers) who have taken the time to comment or to email and let me know they are reading my blog and are touched by my story or off a kind word of support or solidarity in our fight against D.  There are warriors all around me, and it is wonderful to know I am not alone in this.

As I take the time to look around this cold frontier I live in, I am surrounded by people with the warmest of hearts.  People who act as the hands of god and serve their fellow man.  I feel so blessed to have these people in my life and know that soon, I will be in a position again to actively look for opportunities to serve outside of my house with a warm and willing heart.

Balance + Cute Shoes

Tuesday night, I passed out at 10:30, anxious for the warm bliss of sleep and to escape from D for a few hours.  At 3:00 a.m. my alarm shrilly awoke me.  As I threw back the covers, Peanut grunted her unhappiness at being woken at such a rude hour, cracked one eye to see if I was going to make her get up and promptly fell back asleep.  I crept quietly to the door by the blue light of the satellite and turned the knob.  Gently I turn on the hall light, even our wiener dogs, who love to sound the alarm, are too tired to even care who creeps about our house that evening.  I’m torn between gratitude and annoyance, because really we ask so little of them.  I grab the testing kit and go sit on the edge of Seth’s bed.  I pull his hand out from under the warm cocoon of blankets, prick the surface and gently squeeze.  Nothing comes.  So I change the lancet and try again, nothing.  What the heck?  I try once more and again, nothing.  I am so frustrated, I am normally the person who can get blood when no one else can.  My tired brain tries to think of what to do.  Hmm, I finally realize that my bladder is screaming so loudly I can think of nothing else.  I run to the bathroom to silence it’s scream and then head back to Seth’s room.  This time, the dog barks viciously as I approach…really?  I’ve been up for 5 minutes at this point, some watch dog you are.  Seth wearily throws his arm at me, then snatches it back and yells “I’ll do it!”.  He gets it on the first poke, I won’t enlighten him that this is actually the 4^th poke to his poor fingers, thought I suspect he knows.  95.  Go back to sleep son, see you in the morning.

I crawl back in bed, close my eyes and toss and turn.  After about 45 minutes I begin to see pulses of light.  Oh please no.  The pulses get bigger and I know I need to take my migraine medication, but if I do, it will knock me out and I will be of no use in 2 hours when it is time to get kids up for school.   And so begins the inner battle of a working mother. Do I, don’t I, what do I do?  The headache continues to worsen until I ultimately decide that I will stay home from work, so I battle the headache until it is time to wake the kids up.   Except…once Seth realizes I am staying home he begs and pleads and cries to stay home too, because he’s tired and he HATES school.  Ugh!  Now I get to deal with my pounding head, sketchy vision and a uber cranky kid, lovely.  I put on my mean mommie face and make him go to school because I know that with D there will be days that he can’t go to school and this is not one of them.  I get him on the bus and thank Heavenly Father that Leah was kind enough to offer to get herself ready for school so I can go back to bed at 7 (she leaves at 8:30), right now she is my favorite child.  I take my medicine, use Peace and Calm essential oil and collapse into bed and blessed dark sleep.

I don’t remember exactly what happened after that, but I know when I woke up at noon with a slight headache, Mark was in bed and I had a now melted ice pack on my head.  Mark said when he came in I was moaning and mumbling, all he could understand was migraine.  Bless his heart for administering the icepack.

I realized when I went downstairs and surveyed my trashed house with laundry that needs to be done and dishes that are piled in the sink…this is the first time I have been alone since Seth’s diagnosis.  We have been so busy trying to put everything in place for Seth, that I’ve had no time to clean or think about anything but D.  So you know what I did?  I bought shoes for my family for our upcoming trip to Walt Disney World.  Seriously, how cute are these?  Crocs have come a long way my friend!

I made dinner reservations for our vacation.  I looked at lanyards and id pouches.  I didn’t clean or do laundry, I didn’t get a head start on dinner.  I simply enjoyed myself yesterday afternoon.  And I went to bed early and slept so hard that I slept right through Seth’s 3am check.  I woke with a pang of guilt at 6 and checked his number, 95.  Whew!  That WILL NOT become a habit.

So today, I am feeling only slightly tired, but more balanced than I have felt since this whole rollercoaster began.  Yesterday’s migraine was worth the peace I got to feel yesterday afternoon.  I need to do better at being more balanced in my daily life.

Mom’s need sick days too!

Our New Normal

This cartoon is for all my teacher friends:

For the last week, we have finally begun seeing normal BG numbers for Seth.  The NP would like to see his numbers range from 80-175 right now with the ultimate goal being 70-150.  We experienced our first "low" this week, which for now would be a number below 80.  Seth has been running sweet (above 175) for so long that his body is not used what we would consider normal.  So it was important for us to help him:

1. Understand the difference in how his body feels when it is low vs. high.  We have learned that when Seth is low his hands shake and his legs feel weak and he gets extremely irritable, that was a fun lesson learned.
2. Work through lows in the 70-90's without glucose or sugar to stabilize him so that his body will get used to that as a normal number for him and send a signal to him that he is low when he falls below 70, which is normal for you and I.
3. Learn the important of treating a low with a quick acting sugar (glucose tablets, juice) and follow that with a fat (Almond Butter, Peanut Butter & Crackers) that will help sustain his BG so that he doesn't rollercoaster with his BG. For example:  His BG was 70 one day after swimming, so he drank some grape juice, which elevated his BG to 111 so he got on the bus.  30 minutes later, I called him just as he walked in the door and had him test, he was 60.  The next time that happened we gave him juice and some peanut butter crackers and his number stayed over 100...lesson learned, and thank you Tonya for reminding us of that information.  :)

I thought it might be interesting for you to see what our daily schedule looks like now:

***************************************************************************************
3:00 am BG check

6:00 am BG Check followed by 60 carb breakfast.  If Seth is high then give 1 unit of Humalog (rapid acting insulin) for every 50 points he registers above 150 to cover AND give 2 units of Humalog per 15 Carbs (CHO's) for breakfast).

8:30 am BG check (two hours after meal) 0 carb snack if hungry

12:00 pm BG check followed by 60 carb lunch.  If Seth is high then give 1 unit of Humalog for every 50 points he registers above 150 to cover AND give 1 unit of Humalog per 15 CHO's for lunch.  If this happens to be the one day a week that Seth has a long swim, then we calculate all of this and give one unit less of insulin to counteract the exercise.  Exercise decreases Seth's blood sugar.  We also keep a can of juice over at the pool in case he feels low while swimming and then he tests after swimming to make sure he has not fallen.  2x now he has and has needed juice and peanut butter crackers to help raise his BG to within normal range.

2:15 pm BG check (two hours after meal) 0 carb snack if hungry

4:00 pm BG check

6:00 pm BG check followed by 60 carb dinner.  If Seth is high then give 1 unit of Humalog for every 50 points he registers above 150 to cover AND give 1 unit of Humalog per 15 CHO's for dinner.

9:00 pm BG check.  11 units of Lantus (long lasting insulin)

9:30 Bedtime
***************************************************************************************

Today was our first Sunday at church since the diagnosis.  It has been so cold that church has been impacted.  It was so nice to go back today and partake of the spirit and be mindful of our blessings.  Friends and acquaintances asked me how we were doing and expressed sympathy for this, which was nice.  But I also felt a little weird, because we are past the shock phase and are moving forward. 

Since my post: Our Terms, I really have felt such peace about this.  I am so thankful for the treatment we are receiving, I am thankful for the knowledge that is out there, I am thankful that I have been able to coordinate benefits between our two insurance so that we have generous coverage until Seth is 26 years old (as long as we both keep these jobs), which is in our career plans.  Hopefully our employers feel the same way.  :) 

We are moving forward and beginning to investigate pump options in the hopes of charming our doctor into letting Seth get one prior to the one year mark that has been mentioned, ideally this summer while I am off work so we can learn how to use it.  We are trying to educate and inform ourselves so that we can be the best advocates for our son.

On another note, only 46 days until we head to Walt Disney World.  We are seriously so excited we can hardly stand it.  Woo to the Hoo.  I just bought the boys their Legoland tickets, Seth is super excited about that and so is hubby.  I guess they never really grow up do they?

Our Terms

I came across a diagnosis story today on a blog and this mom shared something that her daughters wise and kind nurse said to them their first evening in the hospital...after my pity post earlier, this quote really jumped out and empowered me:

"He told us that we were beginning a life long journey with diabetes and the sooner we made friends with it, the easier it would be because it is much easier to carry a friend than an enemy."

These words spoke to my heart.  I can't fight this, it's not going to change anything.  There is no cure.  There is only acceptance, after all, what is the alternative? 

So diabetes:  We didn't invite you into our family, but since you are here...we fully accept you in our lives so that we may live with you on OUR TERMS.  You will not hold us back or define us, you will just be another part of our story as we continue to live our extraordinary life.

The Dustins
Living with T1D

Released

January 6, 2012

Sunday morning arrived and Seth and I were both antsy to go home.  We thought we were going home the day before, but Seth had a high BG in the morning, so the doctor wanted to adjust his nighttime Lantus one more time and observe him.  At this point he is now up to 6 units on the Lantus.   The doctor said that it would depend on his BG reading at 10:00 (2 hours after breakfast).

10:00 came and Seth tested his BG.  The meter read 304.  We were so discouraged, but the doctor said that they were going to release us anyway and she had scheduled us an appointment with Nurse Ranft at TVC the next morning.  Nurse Ranft is a CNP who used to be the diabetes education coordinator in Fairbanks, so we feel pretty comfortable with her overseeing our case.  Please remember we live in a rural area, we do not have ready access to specialists.

We called Mark and got packed up.  We were ready and waiting when he arrived.  We were discharged and made a quick stop at Sam’s Club on our way home to pick up a few groceries.

As we were shopping, we also decided to eat at Sam’s.  We checked the carb count on the Polish Hot Dogs back in the refrigerator section 5 c’s and the bun, 45c’s.  That put Seth at 50 c’s for lunch.  We discussed where to go to do Seth’s test and injection.  Seth did not want to go to the bathroom because (in his words) they are disgusting.  Back by the buns are pallets of salt and it is kind of an isolated area that he thought would be okay.  I told him to have a seat on the salt and do his test.  He got out his tester, put the strip in, swabbed his finger with alcohol and had the lancet poised over his finger when a gentleman came over and stopped in his tracks.  Seth looked up and got a little bit nervous.  I smiled a little bit and nodded encouragement.  Just as Seth pushed the plunger the guy says, I’m going to need you to move this little party out of the way, I need the salt that you guys are blocking.  Apparently, out of all the 100’s of bags of salt back in that corner, he wanted THE ONE that Seth was sitting on.   Seth kindly moved, and told me we needed to find another spot, he didn’t want to do it there again.  Thank you for your patience and kindness sir (said in my most sarcastic voice possible).

We moved up to the front of the store to a fire exit by the pharmacy and proceeded to test and inject without further incident, but Seth was a little shaken by the experience.  We survived our first public outing.

How we roll

I don't think I've mentioned that up until today, I have not cried.  I'm not sure why.  Too busy coping, learning and assuring everyone that we are okay.  And we are.  Okay.  It will be.  Okay.  But I am human and I am a mom.

I got up at 3:15 am to do Seth's middle of the night check.  I stumbled into his room, hissed at the dog to be quiet and reached for his warm hand.  He slept through, blissfully unaware.  I blinked through my sleep heavy eyes at the screen and saw he was starting to go low, 90.  Crap.  So I woke him enough to drink a juice box from the stash in my closet, and he drifted back to sleep.  Thus began the checks every 20 minutes until his number climbed back to a normal range and I could fall back into bed sometime close to 5:00.  I knew I should have just stayed up at that point, but I was so tired, an hour of sleep sounded like bliss.  I instantly fell asleep and must have turned my alarm off when it went off at 6:00, because the next thing I know my eyes fly open and it is 7:10.  UH OH!  We haven't figured out how to hurry with our new morning routine yet.  I send an email to my boss go wake Seth up.

Seth's body is exhausted from being out of whack for so long.  He begs and cries for me to let him stay home from school so he can sleep.  I wish I could let him, but I can't let him stay home alone right now until we have better control and he is better able to manage on his own.  So, I have to be tough and make him get up.  It was not pretty and he is super cranky when he comes downstairs.  I make the kids whole wheat pancakes with sugar free syrup and sausage for breakfast, with a small glass of milk, because the quick days of cereal are behind us.  We figured out that Seth's breakfast carbs were 45.  He tested and was at 115 so he only needed 3 units of insulin to cover for the meal.  I oversaw the injection, and ran out to the garage to load the wood boiler and then upstairs to get ready while the kids ate their breakfast.

8:00 found us in the car heading towards the middle school.  I called the school nurse to adjust Seth's testing schedule (thank heavens for blue tooth in my car), called the front desk to excuse Seth's tardiness and dropped him off.

As I was heading into town I called my husband to vent about my morning and tell him I needed a little bit more support from him with Seth's bedtime only to get tied up in a huge traffic clog caused by a poor baby moose that had been hit by a car and stopped traffic on the highway.

As I drove past the poor bloodied carcass on the road, I thought of it's poor mother and how panicked she must be feeling.  That is when the enormity of this finally hit me and I couldn't hold it back any longer.  This is a life threatening illness.  We live with the threat of that every day and if we don't manage it correctly the consequences are staggering.

I cried for the huge weight of responsibility I carry from that and for the impact that will have everyday for Seth.

I cried for how unfair this feels.
I cried for not being able to protect my child from this.
I cried for being so grateful that it wasn't cancer.
I cried for all kinds of reasons I can't even put into words.
I was still crying 30 minutes later when I pulled into work and I was so fragile that I was on the verge of tears all day at work.  I excused myself often to pull myself together.

And when the nurse called me at 2:00 to tell me that Seth was low AGAIN (70), I wanted to cry, but Seth was so nervous at that point that it was time for me to be strong and help him.  Thank you Heavenly Father for giving me strength when I was so depleted.  Juice was dispensed and by 2:15 when he needed to get on the bus his number was 111.  I called the house at 3:00 to make sure he had gotten home okay and when he answered the phone his voice sounded a little...distant.  So I asked him to check his BG while he was on the phone with me...in a panicked voice Seth told me it was 60, I asked him how he felt and he said that his hands were shaking and his legs felt funny.  I closed my eyes and tried to remember what the pictograph we have posted on the fridge for this and then decided...he needed to go wake his dad up.

He handed the phone to his dad and I explained what was going on.  Peanut Butter crackers were given and Seth's numbers responded well.  I called our NP (she has given me her home number, how freaking awesome is that?) and we have a plan in place for adjusting his insulin the next time he goes swimming for an extended time like this, so I am feeling better...but mostly what I am feeling is ready for my husband to wake up so I can go to bed and get some sleep...because today?  Today diabetes controlled us and that's just not how we are gonna roll around here.

Just shoot me

January 5, 2012

I want to take a moment here and mention that the staff at Fairbanks Memorial Hospital Pediatric unit was phenomenal.  Seth was the only patient there for the first two nights.  He had the room to himself his whole stay, so I was able to sleep in the other bed in the room and they ordered trays for Mark, Leah and I at each meal.  It was a huge blessing and we are incredibly grateful.

 

Our day nurse: Robin was there for Wed/Thur/Fri, and Seth and I really liked her.  The other nurse that was amazing, even though we only had her our first night, was Stephanie.  Her infant daughter had just been diagnosed with Type 1 a year before.  As she came in each hour to test, she and I would talk a bit more about things diabetes related.  I am so grateful she was willing to share her story and her knowledge with me.

Seth woke up very excited because he was really hoping for breakfast.  He was starving.  Robin gently broke the news that his BG number had been too high that morning, so they were going to keep him on the IV insulin that day and let him eat dinner.  She showed him the hospital menu, which didn’t look very appetizing to Seth, so she offered to order him a Bacon Cheeseburger from the grill downstairs and his eyes lit up.  It’s the little things, right?

Right now, Seth is limited to 60 carbohydrates per main meal (breakfast, lunch, dinner) and 0 carb snacks.  So it was very interesting to watch Seth plan out his carb choices.  His hamburger bun had 30 carbs and of course he wanted ketchup (2 cb).  He REALLY wanted french fries with his burger, but when he realized he could only have ½ cup for 30 carbs, he decided (on his own) that a green salad (5 cb) with Ranch dressing (5 cb) would be a better choice.  He opted for strawberries (15 cb) and a Fuse (3 cb) to drink.  We had a total of 60 carbs.

When it came time for his next hourly BG test, they asked Seth if he wanted to do it and he said yes.  I was secretly thrilled that he was willing to do that (remember earlier mentioned aversion to needles, I wasn’t exaggerating).  So with much trepidation and lots of encouragement, Seth used his own Lancet and pricked his finger.  His eyes got really big and he exclaimed “mom, that doesn’t hurt nearly as bad as the hospitals”.  Again, it’s the little things.  So we squeezed on his finger in order to get enough blood for the hospitals strip AND our strip as I figured we might as well get used to using our monitor as well. 

Mark and Leah joined us at 10:00 just as the diabetes educator came in to teach us how to give injections and go over nutrition information with us.

It was a LOT of information and we were still processing everything, I was kind of glad to see her go so we could just be a family.

Mark and Leah headed home just before dinner to take care of the woodstove and the dogs.  It was Seth and I again.

At 6:00, his dinner arrived, and I had a happy boy. Now we had to figure out how to apply our insulin to the carbs.  They started out with a standard ratio of 1 unit of insulin per 15 grams of carbs for all 3 meals.  So that meant that Seth would need 4 units of Lantus (rapid acting insulin) to cover the carbs that he would be eating.  The nurse asked Seth if he wanted to do his own injection.  He had a look of pure panic on his face.  “No thanks.”  I offered to give him his first shot and he said that would be fine.  Seth asked me to get Grellow for him, because he didn’t want to watch.  So I put on my big girl panties and prepared the shot.   And I did it, and Seth didn’t even feel it.  Booyah! Take that diabetes!!!

At 9:00 it was time to give Seth his dose of Lantus, (long acting 24 hour insulin) and I did it again.  As a personal note of pride, I am happy to say that Seth has only been given injections by his father, himself and I. 

With these shots we have begun manually managing Seth’s diabetes.

Drama Queen

So Leah suffers from the typical youngest child syndrome.  She doesn't think she gets enough attention.  This kind of cracks our family up because she is the neediest of all our children put together. She is definately feeling displaced with the attention her brother has been receiving lately.

This afternoon at work my cell phone rang. I ran from the circulation desk and grabbed it just as it went to voice mail.  I immediately called home to make sure everything was okay.  When Leah answered the phone, I could hear her tearful voice.  Oh no, my mind started racing.  I asked her what was wrong.  She tearfully responded that she needed to talk to me when I got home from work.  I told her I would rather talk to her now as I was worried.  She refused.  So I proceeded to grill her:

Did something happen at school?  Yes.

Are you okay?  I think so.

Is the principal going to be calling me?  I don't think so.

Do I need to call the principal? No.

Did someone do something to you? No.

Did you start your period? NO!

At this point, Leah was tired of being interrogated, so she broke down and told me to just hurry home and to honk when I pulled into the garage so we could talk privately.  What on earth is going on?

I decided it was probably girlie hormonal issues that she didn't want to discuss with her dad and finished out my day.

I got home at 4:45 and pulled into the garage.  My car was so happy to be in a warm garage, it seriously thought I was abusing it parking outside today...but I digress.

Leah came out to the car and I could see tears on her face.  Oh no!  This had to be much worse than I thought.  She gets into the car and covers her face.  I started a little freak out at that point and DEMANDED she tell me what was going on.

She looked up, her eyes sparkling with laughter and said "I got the solo in choir!"

Then why are you crying?

I sprayed water on my eyes, I'm not crying.  I'm excited!!!

OMGADS.  Can you say drama queen?  {Terri are you reading, I'm raising your child!!!} I don't know if I am going to survive raising her.

D Supplies

January 4, 2012

This evening at 9:30, I ran down to the hospital pharmacy to pick up Seth’s prescriptions.  The pediatrician’s goal was to begin insulin injections tomorrow and they wanted us to use our own supplies so we would be comfortable with the process.  I went down to Denali Pharmacy and waited in line.  When it was my turn to approach the counter, they brought out two bags for Seth.  They contained:

2 One Touch Ultra Blood Glucose Monitors

200 Lancet Needles

2 Lancet Devices

200 Blood Glucose Testing Strips

5 preloaded pens of Humalog Insulin (Rapid Acting)

5 preloaded pens of Lantus Insulin (Long Acting)

2 Glucagon Pens (used in a diabetic emergency, when a patient is unconscious.  Glucagon is injected and causes the liver to release its stored sugar)

100 Pen Needles.

Ketostix used to test urine for ketones, a sign the body is breaking itself down to use for energy.

Not included, but still needed were:

Sharps Container:  When the nurse brought me one, I just kept thinking, how did we become a family who needed one of these?  Isn’t it weird what your mind fixates on?

Glucose Tablets

My legs may have trembled a little at the reality of this.  Because this wouldn’t even be enough testing strips or needles to last a month once I set up a kit at home and at school.  SCHOOL…oh my gosh.  I have to call into school tomorrow and tell them I won’t be in for my mandatory professional development days.  Oh yeah, the nurses told me to call the Seth’s school tomorrow and set up a meeting with the school nurse and we need to begin the 504 process.

We were pretty fortunate.  That day insurance covered everything  except the Ketostix and the needles.  Seriously?  You’ll cover the insulin, but you won’t cover the needles to get it into my son?  I don’t think so!!!  So I wrote a check for $44.00, lugged it all back to Seth’s room and decided to channel my inner Scarlett O’Hara: “Tomorrow I'll think of some way . . . after all, tomorrow is another day."

~B

Official Diagnosis

January 4, 2012

This morning dawned bright and early and COLD.  We were in the middle of a 40 below cold spell that just cuts through everything.  Have you ever had metal burn your bare skin because it's so cold...yeah, THAT kind of cold.  How perfectly fitting.

My alarm went off and I nudged my husband to wake him up.  We then proceeded to have a conversation about the doctors appointment that morning, in which hubby told me he wasn't going.  He needed to sleep because he had to work that night.  Yeah...he was still in denial.  I looked at him in disbelief and told we were ALL going to this appointment. If we had a false positive (seriously, I don't think so) then all that would happen is he missed an hour of sleep, if it was positive then we all need to be together.  I guess I should have gone for the shock factor at this point and told him I thought we would be going to the hospital, maybe my grief was numbing me because I didn't say a word about my suspicion.

The 4 of us go tromping into the Pediatrician's clinic.  They weigh Seth, 101 (24 pound loss) and take him for a urine test.  They return him to us and we sit and wait for a few minutes, at which point, our brand new (to us) pediatrician Dr. Banks throws the door open and comes in.  He has a bigger than life personality, really over the top.  Very nice, but super hard to take at 9:30 in the morning when you are waiting for this kind of news.  So he asks us all the same questions about thirst, sleep, weight loss, etc. and then says "well, I'm sorry I don't have good news for you.  I know last night at the clinic his BG was high, it's 286 this morning.  But what is even more concerning is that he has lots of ketones in his urine which means his body is breaking itself down for energy, so I have called the hospital and they have a bed ready for you.  Your son has Type 1 diabetes.  This is serious and you need to go right now."

I think the earth may have moved a little and I know the doctor's voice got farther away as my mind became filled with racing thoughts.  "So this is how it feels when a doctor gives you this kind of news".

The four of us stare at him and then my husband says...are you serious?  The grief stricken part of  me wanted to say "what kind of jerk would joke about something like this?  OF COURSE HE IS SERIOUS!!!"  So glad I put my filter on and said nothing.  Mark proceeded to ask if this was reversible (no), will it go away (no), is it temporary (no) and we got a crash course on diabetes which I will summarize in another post.  What the doctor did say that was interesting was he was extremely interested in the pathology of the cyst on Seth's arm (you knew there was a reason I wrote oodles about that, right?) because Diabetes is an autoimmune disorder caused by a virus that attacks the pancreas.

I asked if we could go home and get a bag (really, why didn't I have one ready, I KNEW this was going to happen...doh).  No, you really need to go straight to the hospital.  You can go home and get a bag once he is settled in.  Riiiight, like I am leaving him once he's at the hospital.

My next immediate thought was, this is manageable, we can do this, Seth will be okay.  This could have been so much worse.  So here we go, we have MUCH to be grateful for and I chose to be grateful for technology and medicine that will help my child.

Mark's way of dealing with uncomfortable situations is humor, sometimes it works, other times it does.not.help.  So when the doctor left the room, he started teasing Seth about the IV.  Great.  Let's tease the kiddo who has a huge (like run away, needs to be held down) fear of needles about an IV needle.  Thankfully, Mark got a phone call from work that he had to take so he left the room which gave Seth the opportunity to talk to me and ask me to not have Mark in the room for the IV.  I get it buddy, let me think for a minute.

When Mark came back, I told him that it would be best if he dropped us off at the hospital and went home to get the things we needed, that way we would know what room we were in by the time he came back and would be settled in.  He agreed and we proceeded to make a list of items we thought we would need.

We got to the hospital and checked in at the Emergency Room as directed.  Once they sent us upstairs Mark and Leah left to go home, let the dogs out, load the woodstove and pack our bags.  We got upstairs and they took forever, until I finally explained the IV situation.  Thankfully our nurse, Robin, was awesome.  It took 6 pokes to get the IV started.  Seth was such a trooper.  We worked out a system where we covered his head with this neon yellow/green hoodie we nicknamed Grellow (for its color) and I would hold his hand.

They then proceeded to hook up 3 IV's: Insulin, Dextrose and Saline:

Since he was hooked up to the IV, they needed to test his BG (Blood Glucose) every hour, and do lab draws to test his blood every 4 hours.  So Grellow made an appearance every 4 hours for the first 24 hours for his draws as they were unable to do them through the IV.  And yes, that was a finger prick every hour for the first 24 hours...24 finger pricks.  Not a lot of sleep was had the first night.  Thank goodness for my Kindle Fire and Amazon Prime so I could watch Gray's Anatomy and Seth was grateful for the xBox 360 he got to play on.

The real challenge is that while Seth was on the IV, he could not eat or drink.  So the poor kid had only eaten 1 meal in 2 days...he was starving.  Like on the verge of tears when he smelled the dinner food.  That was awful.  All I could do was get in his bed to snuggle and be the person NOT to talk about how much his life had changed that day, there would be plenty of time for that later.

Suspicious Minds

January 1, 2012

On this day I posted on Facebook: "Well hello 2012...what wonderful things do you have in store for me?  I am looking forward to finding out!"

I had no idea that 2 days later, on January 3, 2012 I would be posting this:

"It is frightening how quickly life can change.  Prayers please.  I will post once we know more."

On October 31, 2011 Seth had come to me with what looked like a pimple on his arm.  He said it had been there for a little while but he couldn't get it to go away.  I messed with it and it felt hard to me.  I told him to leave it alone for a bit to fester and we would let dad work on it when he got home from doing his annual check ride to Anchorage.  And honestly...I forgot about it...(hanging my head in shame)...until his dad saw it a week later.  Mark didn't know if it was a pimple or a boil, but he knew that it needed to be popped.  EXCEPT, Seth wouldn't let us anywhere near it once he saw us sterilize the needle.  We begged and pleaded and negotiated and even threatened for an hour...he wasn't budging.  So we did what any good parent does, of course.  Told him to leave it alone and let it fester.  Except it didn't fester it just kept getting bigger.  Finally, right after Thanksgiving, I took him into the PA clinic.  The PA looked at it and said it was a cyst that needed to be removed.  No, sorry, he couldn't do it, we needed to go to a dermatologist.  No, he didn't think it needed antibiotics.  He asked if I had any other concerns.   I said that I was concerned with the growth on his arm and the fact that he had lost about 15 pounds, I wasn't overly concerned but I didn't want to ignore a potential problem either.  We discussed cancer and he set my mind at ease.  He agreed that Seth was at an age where a lot of boys start to loose their spare tire and we left the clinic.

I went home and called the two dermatologists in the phone book and neither of them were able to see Seth until February.  And then it occurred to me that Tanana Valley Clinic (TVC) has a department there for almost everything, maybe they have a dermatologist there too. So I called and they did.  They were able to make us an appointment for December 22.

A week later, Seth took a hot shower and came down afterwords in a towel and asked me to look at his arm again cause he'd gotten a little something out of it in the shower.  TMI ALERT:  I gave it a light squeeze and all of a sudden a ton of neon green fluid starts coming out, followed by brown fluid, followed by blood.  My immediate thought was...we finally got it.  I put some bacitracin on it along with a band aid and sent him to bed.

Well, the next day Seth goes to wrestling practice and his coach sees the (ahem) bruised angry looking welt on his arm and sends him home with orders to go to the doctor and not return to the mats until it's been looked at...SIGH, so back to the clinic we go.

At the clinic, a different PA looks at Seth's arm and says the cyst has popped, still can't give antibiotics and we still need to go to our dermatologist appointment to make sure this is completely cleared up.  She writes him a note to clear him for wrestling and we are on our way.  BLERGH!

As I stated Seth had joined the wrestling team.  At his first practice on November 1, 2011 he weighed 125 pounds.  When he had his weigh in for his first tournament on December 16, 2011 he weighed 108 pounds.  I was a little concerned when I heard that number, but we had so much going on with the end of the semester wrapping up for the kids and for my work, Ashlyn coming home from college, not to mention that I still had to get everything ready for Christmas, that I pushed that to the back of my mind.

Seth had his Dermatologist appointment on 12/22/11.  I was glad we had kept the appointment, because the growth had come back.  It ended up taking a 6mm cookie cutter punch to remove the cyst, which was sent off for biopsy.  I am happy to report it came back benign.  Here is a lovely picture of his frankenarm:

There were internal dissolving stitches as well as these external stitches.  Nice huh?


Once Christmas was over and I had a chance to catch my breath, I noticed that I was constantly re-filling , or telling the kids to fill, our mondo big Brita water pitcher in our fridge.  I actually got a little irritated that I could never get a cold glass of water, and might have yelled at Seth for always drinking all the water in the fridge.  He just looked at me and said "but mom, I am SO THIRSTY".  It was at this point a little alarm started going off in my head.  That night, I couldn't sleep and noticed that someone was up wandering around the house 2 times that night, it was Seth.  When I talked to him in the morning and asked what he was doing, he said he had to go to the bathroom and refill his water bottle.  WHAT.

Big weight loss, super thirsty, really tired.  Could he possibly have diabetes?  I talked to my husband about it that Sunday evening (1/1).  At first I got a blank stare and then...denial.  Nah.  It was easy to focus on it NOT being diabetes, but I was starting to suspect that we needed to get this checked out.  Mark's parents were up visiting for the holidays and I mentioned it to them in front of my husband to see what they thought.  They thought it would be worth having him tested.

Mark had to go to the PA clinic on Tuesday 1/3, so we agreed that we would take Seth at the same time.  On Monday night we told him no food after 10:00 pm.  He could still drink water, but no food.

Seth ended up falling asleep on the 20 minute drive to the clinic and by the time they saw him it was about 2:30 in the afternoon.  The PA said for a 12 hour fast his Blood Glucose (BG) should be under 100.  If it was over that, they would do further tests.  They did a finger prick and we all anxiously watched the display countdown: 5.4.3.2.1

234

Such a nice orderly, consecutive number, but THIS is the number that changed our lives.

The technician went ahead and drew blood.  Poor Seth has such a fear of needles and his poor veins were not cooperating.  She finally got it and left the room.  Almost immediately the PA came in.

I locked eyes with the PA and she gently nodded her head...and in my mothers heart, I knew.  I knew in that moment, our lives had changed forever.  I was just waiting to hear if it was Type 1 or Type 2 Diabetes.  I glanced over at my husband and he was still smiling.  I kind of nudged him and said "are you okay".  Still smiling he looks at me and says "Yeah, there's just something wrong with their machine, you'll see when the test comes back".

The PA told us she had made an appointment with a Pediatrician at TVC at 9:30 the next morning.  Seth could go home and eat as usual, but probably not a lot of sugar.  Sorry she didn't have better news and we were on our way out the door.  What did all this mean, why, how?  There were no answers to be had that night.

As I was thinking about it that night, I felt in my heart that we would be admitted to the hospital the next day.  It was the only thing that made sense to me.  How else would we learn how to manage this, how would they know what he needed to be healthy?  I am so grateful that Heavenly Father was helping me, because my husband was still living firmly in denial.

My Family

This picture was taken this summer, June 2011, on the beach down the road from my in-laws.  It took a monumental effort to talk everyone into taking the picture, and I was so surprised at how easy it was once we got there.  I treasure this family picture.  So here we are.  We are the Dustin's.  My husband Mark and myself (Becky) have been married for 16 years.  We have 3 children, who mean the world to us.  We would do anything for them...little did we know that in 6 short months, we would be faced with a life changing event.

My husband is a hard working railroader.  Though he has 13 years on the property, his seniority is still so low that he continues to work nights...which makes him a day sleeper.  Blergh...not fun.

I am working as a librarian's assistant in one of the high schools in our school district and taking online college courses, waiting for an elementary librarian position to open up so I can begin the career of my dreams.

I was a stay at home mom until my children started full time school, at which time I began working for the school district.  I feel so blessed to have been able to stay home with our children until then.

Our oldest daughter, Ashlyn lives in Utah.  She is taking a break from college while she decides what she actually wants to be when she grows up.  She plans to return home this summer and work for one of the local tourist companies.

Seth is our middle child, he turned 12 in November and attends the local middle school as a 6th grader.  Seth joined the wrestling team in November, which turned out to be a HUGE blessing as it allowed us to track his weight loss and see that we had a problem much sooner than would normally be caught.  My condition for his joining the wrestling team was that he not drop weight to make a weight class.  Our family is a bit on the "pooh" side and we struggle with weight issues, so I didn't want to create body image issues in our 12 year old.

Leah is our youngest.  She is 10 and will turn 11 in April.  Leah loves to sing and by love, I mean LOVES to sing.  (She is singing in the shower upstairs as I type).  Leah is super sensitive and very compassionate.

Along with our children, we have 4 (yes 4) dogs.  Dixie a Brittany Spaniel, Mitzy (Seth's) a weiner dog, Fritz (Leah's) weiner dog and my baby...Peanut, a yorkie.

This makes for a pretty crazy house and I seriously do not know how hubby sleeps during the day when the dog pound starts barking, but we love them too, so we make do.

I decided to start this blog to document our journey with diabetes.  I know it will help me to have a place to lay it out in black and white and to have a place for my feelings.  It is my desire to be honest and open and to educate so that family and friends can use this as a resource to understand our life and how fully it has changed with this.  Lastly, maybe it will help someone on their families diabetic journey.

Thank you for joining me on the journey!

~Becky