Monday, March 23, 2015

One Step Forward

He thanked me.  Sugar Bear thanked me for doing his insulin shot this morning at breakfast.  I just smiled and said you're welcome but it has been ricocheting around my brain all morning.  I was thanked for sticking a needle in my son's bruised and battered arm to deliver life saving medicine.  Something we now do 4-8 times a day just for him.  Something we've had to do fairly regularly recently at midnight and 3am.  Sometimes he does his own shots during the day but breakfast almost always is our deal..  It's early, he's sleepy, it's hard to factor carbs and make the right dosage choices.  (Shoot, I recently had the morning mushy brain and made a big mistake and gave him too much insulin.  I mixed up his breakfast carb count with Drago's).  But he has never thanked me.

The last five days have been exhausting.  It's not easy trying to balance two Type 1s, a Type 2, work, house, homeschool for Sugar Bear, school for Drago, getting our fundraising for our JDRF walk going, and still get sleep and needed relaxing time.  And when you add in the challenges of Drago being newly diagnosed, depressed, and a teenager, well....I just can't.  So I take it one blood sugar check at a time (which is now 18-20 or more in a day), one shot at a time (now 8-16 in a day), one moment, one step at a time.  Sometimes just one breath at a time.  My Vitamix has been suffering from lack of use.  We have had less time for the regular upkeep that needs to happen.  My house suffers.  My mental state has good moments and bad.  Again, I just keep putting one foot in front of the other and try not to get too overwhelmed.  Not easy.  Not fun.  I cry a lot in my quiet moments by myself.  Sometimes it is hard to even hear myself think and that is why I blog.

On Friday we had a family outing to our friends, "the house of cure".  It was the first time we've been there since Drago's diagnosis.  He didn't want to go.  But we went anyway.  We rocked it.  It was a nice visit and somehow we managed to keep both kids in range (not an easy feet with pasta and typical BS drops at their house, we weren't sure how Drago's BS would react but it did similar to Sugar Bear).  Of course when we got home they both dropped low.  We spent from 10:30 to about 2am treating both boys' lows.  It is pretty unnerving when they both need me at the SAME. EXACT. MOMENT.  They didn't want Dad.  They didn't like how they were feeling.  I wished....hard....for a cure.

Saturday I went to work soul tired and while I was on my way home Drago had a low in the 50s.  He'd checked his BS upstairs in his room, stumbled downstairs for a juice without his kit.  Hubby can't do stairs so couldn't retrieve the kit for him and Sugar Bear refused to help.  We had a family meeting when I got home to fix what could have turned into an emergency.  Planning, and more planning.  When I go to work I pray that everything will be okay at home.  My thoughts never leave my boys.

We are once again concerned about Sugar Bear's BS numbers.  He continues to run high no matter what we do.  I'm guessing probably a growth spurt but it sucks continually giving him shots at midnight and 3am to once again see high numbers waking up.  Of course Drago seems to have the opposite going on where he is low at midnight and 3am and we are forcing fast acting carbs.  The only two nights it hasn't been like this was last night (they were both in range! At 3am not midnight) and the night they both went low.

Today on my day off I'm working on trying to get more test strips, somehow we didn't have enough for both boys.  We have about 5days left for each boy.  So phone calls with pharmacy and insurance and endocrinologist and the cycle continues.  One step at a time.

Wednesday, March 18, 2015

Having a Ball

I dropped the proverbial ball.  Got Drago to school on time.  Came back home to get Sugar Bear up and fed and BG checked and dosed.  Went to get in the fridge to get his insulin out and realized Drago's was still here.  I forgot to pack his fast acting novolog!  Fifteen days in and I forgot to send him to school with one of the most important parts of his treatment.  I know we have backup at the school in the nurse's office but hubby is on his way over to drop it off anyway.  It's important for him to have it on him, just in case.  I blame the forgetfulness on the 3am check that had Sugar Bear in range but needed fast acting sugar for Drago, he was low for sleep.  He had dropped 80 points in 3 hours and if he continued on that trend we would have had a serious emergency.  (We did glucose tabs because he refused to drink the juice).

Drago has decided he wants to try the Dexcom and Omnipod.  Now to call insurance and work on getting all that in place for him.  I don't know if he'll like it but it seems to me to be a positive step.  Who knows, it might make Sugar Bear interested too.

We picked out a new walk team name.  We are now Team M.D.  The M is for monkey and the D is for Drago.  We designed new shirts that was totally an exercise in compromise in order to incorporate both boys and their desires.  Now to work on more fundraising.  A cure can't come soon enough.

In other news, both boys are going to camp!  At the same time!  To the camp that is specifically for Type 1s where they have nurses and doctors and educators on hand and where I can trust they will be safe!  It isn't until the beginning of July and we had to bribe Sugar Bear but Drago came to it on his own.  He decided that before he goes back to the camp he attended last year he wants to go to camp for kids with diabetes so he could learn how to handle things when he returns to the other one next year!  Such a mature and responsible decision.  These kids amaze me!  Now can I just say I am unbelievably excited!  Hubby and I will have a week to ourselves.  I love my boys more than I can say, but we need a recharge.  As a couple and individually!  A week without 3am checks!  A week off for us.  I know my kids will never get a vacation from all of this, and it makes me feel a bit guilty that I am so looking forward to this when they never can, but Moira in her diabetes burnout session on Sunday talked about making "you" #1, like the saying about putting your own oxygen mask on on an airplane before you put your child's on.  It's the first step in beating burn out.  I loved this quote from her "being healthy also involves being happy."

Monday, March 16, 2015

Three Weeks

Everyday we have had tears.  This is so hard on the teenager.  I think it is the stress of school, his diagnosis, and having had a year of witnessing his little brother's struggles.  It all got to be too much for him last night.  The good news is we got an appointment with a child psychologist who has Type 1.  The bad news is it isn't for three weeks.  I feel so out of my element handling his depression.  I don't know what to do so I just hold him and let him cry.

Friday when I got home he was dealing with his first low.  He was miserable.  He felt awful.  His hands were shaking.  On top of that he informed me that one of his teachers gave him a test on things that were taught when he wasn't there and failed it.  So there were tears Friday.  Saturday I worked and when I got home we dealt with highs while trying to do homework.  More tears.

Yesterday was the first day in almost two weeks that seemed like a good day.  It was just the two of us.  We went to a JDRF summit and as reluctant as Drago was he seemed to enjoy himself.  He even went to a teen session (no parents allowed).  I think one of his faves, and definitely one of mine, was listening to world snowboarder Sean Busby talk.  He was truly inspiring.  While Drago was in the teen session I went to one on burnout by Moira McCarthy.  I definitely needed that one.  We met up at lunch with one of my friend's from college.  During the conference I saw glimpses of my Drago--he even smiled a few times.  Of course he wouldn't let me take any pics of him.  He was adament on that.  We met up in the afternoon at the conference with his buddy from school who is Type 1 and has an older sibling that is also Type 1.  They came to the hospital when Sugar Bear was diagnosed.  Drago's buddy has other siblings that don't have Type 1.  I've read that a sibling of a Type 1 only has about a 5-6% chance of developing it.  I guess we won the lottery.  We always seem to hit those unlikely's.  It was very nice to connect to another Mom of double Type 1s.  She is absolutely amazing.  We attended a session on 504s and have some positive thoughts on dealing with our sons' school. We left the conference full of good feelings and confidence. The drive home was nice and Drago regaled his Dad and Brother with lots of excited information when we got home.  It warmed my heart and made me want to cry all at the same time.  At the conference Drago's favorite find were these pen needles.  He says they don't hurt.  His brother agreed.  Both boys basically did all of their shots on Sunday.  I just wish our insurance covered them, it doesn't so I'm not sure that we can do anything about it.  Things were really going great until Drago had a complete nosedive on his emotions. The evening ended with me holding him once again while he bawled.  He woke this morning with a migraine and more tears.  My heart is so broken for him.  We heard today from the psychologist's office.  He has an appointment in three weeks.  It can't come soon enough.

Friday, March 13, 2015


It has been a very challenging week and three days. Drago has surprised me by giving himself some of his shots daily as well as doing some of his BS checks too.  There has been a wide range of emotions.  Lot's of crying, lot's of anger and not just from the newly diagnosed teenager.  I have witnessed utter despair and anguish as well as determination on Drago.  We are looking into getting him some professional help for him.  We already have a referral for a psychologist that has type 1.  Hopefully this can help him.

Last Wednesday we headed back to the hospital for more lab work as well as a refresher course on Type 1 for Drago.  It was nice to see our diabetes educator but not for these reasons.  Both boys retook the test and did great.  We also got the "Ferrari" of pens for both of them--the Echo.  We are loving it a lot more than the Jr. Pen.

Thursday and Friday were spent with high blood sugar, sleepy Drago, and just generally trying to wrap our minds around the BOGO aspect of our life.  A blur, a fog, walking a forest unable to know exactly where the path is.  Friday I also stopped at the school and had a meeting with the nurse's assistant so Drago could return to school on Monday.  That was an interesting meeting.  Lot's of push back when I mentioned getting a 504 plan together.  Also was informed he would need to pack because they don't have the carb information for the school lunches.  There are 6 other type 1s in the school and only one of those buys the lunch, the rest pack.

Saturday saw some in range numbers and then we had our first low numbers to deal with at 3am.  That was even more challenging than trying to get juice into Sugar Bear with a low in the middle of the night.  Trying to balance.  Trying and trying.  Sugar Bear told me I need to have Type 2 so Mom and Dad could be the Type 2s and he and his brother could be the Type 1s and we'll just be a family with diabetes.  Made me want to cry.

Monday was back to school.  I cried after I dropped him off.  When I got home from work he was a mess.  Tuesday morning he had super high blood sugars at midnight and required shots and woke in just utter despondency.  I've never seen him so distraught.  I kept him home and spent the morning trying to get the referral to the psychologist (which I did) and emailing his teachers and school administrators about what all was going on.  The school is now working with him on all the missed testing and homework.  That relieved some of his stress.  Back to school on Wednesday which went a lot better.

And then yesterday was the endocrinology appointment for both boys.  We had to be there for Sugar Bear's fasting labs at 7:30am.  All in all it was an okay appointment.  Sugar Bear's A1c went up due to all the highs from being sick recently.  And I feel like I've failed.  I know that isn't the case but with having two Type 1s I worry that we can't do this.  That we will drop the ball with one of them.  It scares me.  It makes me want to cry.

So here we are on Friday and Drago is once again at school.  A little better this morning but had difficulties doing homework last night because he ran high all day (stress probably).  And I am headed in to work.  There seems to be even less and less time in the day.

Tuesday, March 3, 2015

Sucker Punched

Sucker punched today.  Isn't that an ironic phrase, sucker punched.  It makes me think of lollipops and tootsie pops, but this wasn't one of those.  I feel like someone punched me in the gut, made my heart relocate to my stomach, closed off my throat and put imminent waterworks behind my eyes.

I went to wake my 14 yo up for school this morning only to discover he'd wet the bed.  He doesn't normally wet the bed.  Although, I'm sure you remember we had something similar in December.  I got the meter out and tested his BS.  314.  There really is nothing I could say after that number.  I called the school to let them know he would once again not be there.  Then I called Sugar Bear's endo.  They said they couldn't see him; I guess since he's not one of their patients.  So I called his pediatrician.  They said they couldn't see him til tomorrow evening because he had to be seen by one specific doc.  At this point I'm furious.  I've rechecked and he was 259.   He still hadn't eaten which would be necessary for blood work.  So I called my husband and my doctor.  She said she could see him.  They did a urinalysis and an A1c.  We won't have the A1c results til tomorrow.  The urinalysis wasn't good.  The only good thing about it was no ketones.  The doc then called the referral for the endo.  She did tell me it would probably be a day or two before the endo got back with us.  Finally got some food at 3pm.  Endo's office called very soon after we got home and we are headed in there early tomorrow morning for more blood work and a "refresher" course on type 1.   Endo called again a little bit later and said to check blood sugar two hours after eating and to call if he was over 300, it was 402.  Endo doc gave us some numbers and corrections to use for dinner and the high number and directions to call back if the next check was over 200.  First ever shot of 5 units of insulin in the right arm.  He didn't even flinch.  He was nervous.  Anyway, then I needed to get the supplies from the pharmacy.  Big hassle.  They didn't have novolog (the fast acting insulin).  I needed to pick that up about a half an hour away at another pharmacy and some supplies won't be in til tomorrow.  Luckily (I say in jest) we have supplies already on hand.  When I went to get the insulin, it hadn't been refrigerated.  Had to ask for a new one that was refrigerated.  On the way back home i stopped at work to see if it was possible to move my shift later so I could be with Drago at least for a little bit in the morning.  I go into work at noon.  Then I called to see what his two hours after eating number was--376.  More insulin, 3.5 units and give long lasting lantus at 10.  When I got home I was getting the supplies out of the van, rain pouring when a car drove by and splashed me.  I was soaked.  I went
in, cleaned up and gave him the Lantus at 10 with tears streaming down his face.  He then went upstairs and bawled his eyes out while I held him.  He's scared.  He hates this.  I hate this.  I can't believe we are here.  I know, I know at least we already know this and we caught it early before DKA but it's not stopping me from saying this just isn't fair!

This. Just. Isn't. Fair.