Monday, June 15, 2015

The Right Tools at the Right Time

Yesterday I got a flat on the way home from work.  No spare tire, but that is what AAA is for.  Even had a Good Samaritan offer to change my tire if I'd had a spare.  And another lovely stranger hoped my day got better when I was waiting on the tow. AAA got me (and the groceries) home with not too many issues.  Even had a lovely nonD conversation with the driver, all about his engagement and future plans.  It got me thinking and reminiscing about those early days in our relationship, the before our boys time.  Before diabetes when the health issues we were dealing with was my endometriosis and hubby's psoriasis and vitiligo.  In retrospect it seems easy but I know better.  It wasn't but I do think it gave me tools for the even bumpier road we are on now.  I wanted babies.  I wanted a girl too.  I worried when I was pregnant that if I had a girl she'd have endometriosis and all that entailed.  It never crossed my mind to worry about autoimmune diseases in my boys.  Both were so healthy.  I ate pretty healthily through both my pregnancies.  Avoided c-sections with both.  Breastfed both for close to three years each.  Delayed vaccinations.  And I like to think all those things kept the boys from developing Type 1 earlier, because I've read the studies that not doing these contributes to Type 1 showing up if you are genetically predisposed to having it but only needing a trigger.  The worst illnesses they both had was strep or chicken pox.  Sugar Bear used to get croup every year.  And Drago had the flu right after weaning.  Anyway, all circumpect and retrospect.  Now we deal with our "new normal" with the tools we have.  I hope we pass these tools on to the boys and that they know how to use them.

Last night, for the 3am check, Drago checked his brother and himself. I didn't find out til this morning when I awoke and couldn't understand how I missed that check.  He wanted to let me sleep.  I slept soundly for more than five hours straight.  My brain feels less fuzzy this morning.  I'm less irritable.  I dreamt.  And yet it is bittersweet, to think my oldest was thinking of me and his brother....makes me tear up.

Tears are close to the surface a lot lately.  This marathon journey fills my thoughts and plans daily.  I love the Dex and can't wait for Sugar Bear to have one too.  Drago being diagnosed changed this family even more. One silver lining is the sibling bond.  Drago once again paves the way. I know what is important.  I know what I need to focus on.  But all this can be so lonely.  So isolating.  Thankfully there is the D.O.C.  They help me stay sane.  They give me a place to vent.  They support.  They know.

And so I stay ever vigilant.  I research.  I cry in private and I can now hold conversations that don't necessarily revolve around Type 1.  But it is always there.

Friday, June 12, 2015

Always Something

Sunday after the walk was rest day and  new insert for Dex and boy did we need it.  We missed having that info.

Then Monday dropped Drago off at school and picked up our medical supplies from the nurse's station.  I had a great conversation with the nurse and the assistant about ketone meters and CGMs.  Both knew very little about them before Drago's diagnosis even though their are 6 other Type 1s in his school!  I do love to educate.

Tuesday was the last day of school and that night was exhibition night from 5-7.  Just Drago and I went.  We had a great time.  I loved seeing one of the projects he did in Language Arts.  It was really creative, but my favorite was talking with one of his teachers that has been so supportive through Drago's diagnosis.  I was able to thank him in person and let him know he made a difference.

Wednesday I went to a meeting for new campers to the diabetes camp the boys will be going to in about three weeks!  It left me both excited and nervous.  A doctor and nurse and two counsellors in every cabin of 12 kids.  They provide all medical supplies (insulin, syringes, meters, test strips, glucose tabs, etc...-everything except Dex sensors and pump inserts).  They won't have their kit because they won't need it.  Both boys were a bit nervous about that but our endo said they are always with someone who has those supplies and they can test whenever they need too.  That seemed to help.

And Thursday was both boys endocrinologist appointment and orthodontist appointments.  Both A1cs went down!  Everything looks pretty good.  The only concern right now is Sugar Bear's thyroid.     His TSH is elevated--5.2.  The next appointment he has to do some lab work just for the thyroid.  It is highly possible he has an autoimmune response hurting the thyroid (hypothyroidism).  It's not out of the realm of possibilities.  And I keep telling myself we'll cross that bridge if we come to it.  But it makes me want to cry.  He doesn't need another diagnosis.  He doesn't need more medicine to keep him going.  Type 1 is plenty.  You hear me, Universe?  Leave my baby alone!  Anyway, the endo printed a graph from Drago's Dex and that definitely was a high point of the appointment.  We were able to come home and download the software on his computer and he has access any time to that info.  This made him very, very excited.  He wants to bring his 6.9 A1c down even more.  I'm so proud of my boys!  Drago is talking pump now and Sugar Bear seems to be changing his mind on all these technologies.

Dex part three

After the walk it was time to have some fun at the Park and ride roller coasters.  Hubby and best friend were leaving so it would just be best friend's husband, myself, and four kids.  But oh knows, where are the tickets and food vouchers?  Somehow before the walk when I was handing out t-shirts I must have laid them on the bleacher seats and never picked them back up!  They were nowhere to be found.  The folks with JDRF are beautiful, beautiful people and made everything work out.  We headed in and the first ride that two of the kids wanted to go on was Banshee.  I tested Sugar Bear and calculated the possibility of blood sugar dropping while in line and figured he was good to go.  Handed Best friend's husband (BFH) some glucose tabs to put in his pocket just in case and then I waited with the two teenager's.  Next thing I know the Dex alarms with two arrows down and Drago isn't feeling great.  We check and confirm he is low, get him a juice and a pudding and while we are waiting for the retest the rest of our crew comes back from their thrilling ride.  Recheck and everything is good and head out for more fun.  We made our way through the park, riding bumper cars, playing in the arcade and then it was time for the next big ride that everyone was going on (except me--herniated discs last summer had me playing it safe).  Checked both boys and both seemed good to go.  While waiting on them I struck up a conversation with the woman next to me who had a team shirt on.  We had a great conversation about pumps and CGMs and diabetes camp.  And then my group was back from the ride.  One look at Drago and I knew we needed to check him.  Checked the Dex, double arrows down.  Tested and he was 64.  Got a juice in him but he was dizzy, shaking, and not very coherent.  Had him eat four glucose tabs too.  Fifteen minutes later he was 89, and felt somewhat okay enough to walk and get lunch.  I sat with him while BFH got lunch for everyone.  Once he was eating he perked back up.  Lunch and insulin and uncovered dippin dots we headed back out.  I took the boys for bumper cars and more arcade games and BFH and his daughter went to ride Diamondback.  We ended up meeting back at the carousel where Sugar Bear and Lil Miss rode together.  They were so cute.  We wrapped up our fun at the park around 2:30/3 and then loaded up in the van for me to take the other family home, go collect my husband, and head back over to their house for more fun and dinner.  At BF's house we ended up removing the Dex sensor
around 8:30 because it was causing some pain.  I'm guessing it got bumped a few too many times on the rides.  So we flew solo for the night and that was a little unnerving.  But everyone did great.  Sugar Bear did have a low at 3am but it was easily corrected. No seizures!

Wednesday, June 10, 2015

Dex Part Two

We arrived with about half an hour before the walk started.  The plan was for hubby to get an electric cart and be able to roll with the walk.  While he was looking into that I was collecting Team items, tickets and t-shirts, as the captain.  We had some amazing last minute donations that put us over $1200!  This allowed us a few tickets for the park afterwards.  Both boys were doing amazingly well. A little high with all the excitement and the extra 15 carbs left off at breakfast.  Finally found our team in all the chaos and hubby delivered the message they weren't open for him to rent a cart meaning he won't be able to physically be with us.  Pretty disappointing.  I passed out t-shirts to our 6 other members of our team, gathered our things, stood for the Star Spangled Banner, and it was time to walk.

It was a different route this year.  We missed seeing the animatronic dinosaurs but the kids seemed to like the game area we walked through.  Things moved pretty steadily.  At the beginning of the walk, Drago spotted a Dexcom on a girl's arm and excitedly pointed it out to me.  Later on Sugar Bear noticed a girl off to the side testing her blood sugar.  And there was the back of one shirt that the boys loved.  It said "laughter is the best medicine, unless your Type 1 then insulin is the best medicine."  The walk was "easier" in some ways this year.  There were no complaints of are we done yet, how much further.  Only had to check Sugar Bear's BS once and could just glance at my share ap from the Dex on my phone to know what was up with Drago's.  Part way through we had a potty break and then it was over almost as quickly as it had started.  Walking through the vendors we picked up an Omnipod Demo for Drago and two books for one of the kids on our team.  Even with the hurried chaos of the morning it still was more relaxed then last year. be continued

Tuesday, June 9, 2015

Dex part one

Busy, busy, busy.  End of the school year and Drago, who missed weeks of school, is cramming to get everything done so he passes one of his classes and doesn't have to do summer school.  Our JDRF walk this past Saturday.  And the biggest news and change in the household is we got a Dexcom with share capabilities for Drago almost two weeks ago.  He was so excited we put it on right away after watching the tutorials and talking with our rep.  It has made a noticeable difference.  Even Sugar Bear is interested in it now!  I've been saying for over a year that the CGM (continuous glucose monitor) would be awesome.  It really is.

It was intimidating.  The insertion plunger made both of us nervous.  But the fact it hurt no more than a finger prick or a shot went a long way in making our experience good.  That first week and first sensor was a game changer for us.  Drago slept!  He has more energy.  He's more relaxed.  He feels like he's gained back some freedom and control.  It's not 100% so you still need to check with an actual blood glucose especially for dosing insulin or treating lows.  It has an accuracy of +/-20% 80 and above and a +/-20 points when below 80.  It absolutely needs to be calibrated every 12 hours and sometimes more.  The adhesive leaves a lot to be desired.  (We had to purchase some tegaderm to keep that first sensor on.  A box of four pads is $16!). When it came time for removal last week we were once again nervous not knowing what to really expect.  He said he hates the removal more than the insertion.  For adhesive that didn't want to stay stuck during the week it didn't come off easily when we wanted to remove it.  We had a little break of a few hours before putting the second one in.  And then Drago did almost all of the steps for putting the new one on.  (Actually pushing the plunger and pulling back on the collar still falls to me.  I get it.  It's a little unnerving.).

And then we had our walk on Saturday.  Had a very early arrival time, and ended up later than we planned because Drago had a not so great night, was sleepy, and is a teenager.  Then when you factor in breakfast, blood sugar checking, and insulin shots times two, well.....we were half an hour late. be continued