Life Support

I have two sons.  They both are on life support.  Without insulin shots they would die.  With too much insulin they could die.  It's a balance.

I learned recently that a teenage T1D girl died in the hospital.  The doctors and nurses thought they had her stabilized.  She had arrived in DKA, which can happen at anytime, due to high blood sugars and not taking her insulin.  She passed away from a seizure while talking and laughing with her family.  In a hospital.  Surrounded by nurses and doctors.

When I used to think of life support before Type 1 entered our lives I'd see images like my Great Grandmother, in the hospital hooked up to machines.  Tubes and wires everywhere.  Tools to keep her alive.

Type 1s have tubes, and wires, and machines to keep them alive.  My boys right now "only" have a continuous glucose monitor, Dexcom, attached to their body, but our family jokingly refers to it as going cyborg.  One might try to say it's not really necessary for the life support, but they would be wrong.  In the past couple of weeks it has saved us from using glucagon at least three times, two on the oldest and once for the youngest.  It is a game changer.

At the endocronologist appointment yesterday we got to download the data with the boys doctor.  The CGM is helping.  Both boys had good A1cs.  Drago's stayed the same even though he has been pretty sick the last few weeks.  And Sugar Bear's went down!

Both boys had to have labs drawn.  Sugar Bear's lab was to check his thyroid levels.  The good news is he is fine!  His levels came back to normal.  But the Endo did tell us about 30% of T1s end up with thyroid disease.  We'll keep monitoring.  Drago's lab was for celiac.  He's been having a lot of issues that point to a gastro issue.  We don't have the results back on that yet.

My emotions have been all over the place.  I definitely need a recharge, but it's not easy to do.

I'm just grateful every moment of every day for life support.

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straight to the point

A very brief and straight to the point post about having two Type 1 sons; diabetes sucks!  It just does. Sometimes it's just an annoying tag along but lately it is being obnoxious.  Too many high blood sugars since the teen went back to school and a germ found him.  I hate this disease, love my boys, and pray for a cure with every fiber of my being.

39

A little education.  Sugar Bear's blood glucose target range is 80-150 (so is Drago's).  Anything under 80 is considered a low and must be treated accordingly.  Sugar Bear had three seizures last year in the 60s-70s.  He is now developing hypoglycemia (low blood sugar) unawareness.  He doesn't feel his lows.  The lowest he has been has been 38.  That is a super scary low.  Severe lows, anything under 55, is dramatically affecting the body.  The body's organs can shut down.  Seizures, coma, death are a very real concern at those levels.  Some lows are what we call "sticky lows" which are a challenge to bring back up in range.  You can treat with a fast acting 15g of carbs like juice, wait fifteen and have it drop or not budge.  Recently we have had more of these episodes with Sugar Bear.  They are scary and exhausting.  And you have to stay vigilant even if it is 3am and all you want to do is sleep.  A tool in the diabetes world that is truly a life saver is a continuous glucose monitor (CGM) one brand being the Dexcom.  A CGM is attached to the body and measures the sugar in the interstial fluid in between the fat layers in the skin.  It is not as accurate as a finger blood stick so we still have to do those.  But the CGM will give trends with an arrow.  So if you are dropping or dropping fast the arrows will show that.  It can help you head off a severe low.  It can literally save a life.

Now the rant.  When Drago was diagnosed he had a lot of anxiety associated with going low so we and his counsellor and doctors felt a CGM would help.  We put in the request, sent in his numbers (60 days worth--every day since diagnosis).  At that point he'd never had a low lower than 60.  And he feels his lows.  His Dexcom was approved immediately and we put it on him May 27th.  On May 28th we called the endo to start the process for Sugar Bear to get one.  Somehow the paperwork got "lost" between the endo and the intermediary for insurance and Dexcom.  We surmise that somehow the intermediary company thought it was a request for the same child and tossed the paperwork.  By the time we figured this all out it was the end of June.  We resent the paperwork but somehow the insurance request didn't get to them until July at which point their criteria for approving a CGM had changed.  Sugar Bear's logs of lows (more and lower than Drago's) were not sufficient for an approval.  The letter we received stated he had not had enough severe lows or hypoglycemic unawareness, that it was unnecessary!  So now we are in the appeal process.  Sugar Bear did a week long trial wearing a Dexcom and yesterday our nurse informed us the Dex showed four severe lows (below 50) for the week.  It is weird that that made us "happy".  That that might be enough to get a tool that could help us keep our son alive and healthy.  It makes me so angry that we have to jump through these hoops.  That I have to be an angry mama bear protecting my cub from an insurance company that has never even met us in person let alone knows what my boys go through.  I'm ticked. It is not right that our insurance companies can dictate what medical procedures and/or devices can be used even though they are recommended by our doctors, doctors that have seen us, doctors that personally know our health issues.  Something needs to change.  I worry about my boys when they are grown and on their own having to continually fight not just to stay alive but to make their insurance companies understand the need for their life saving medicines and devices.  Healthcare in our country needs an overhaul.  It is a broken system that just seems to get even more broken.  Maybe we should just run away to Ireland or another country like it, where insulin is freely given and devices are approved more readily....where life is important, not the almighty dollar.  So we'll keep on testing and hoping we're in time, with a juice box readily on hand.

Normal

I am not strong.  Really, I'm not.  I can cry at the drop of a hat.  Regularly I feel like "I just can't."  Many, many things overwhelm me.  And staying positive sometimes is just so hard.  But I put one foot in front of the other.  I allow myself some good cries.  I look for beauty and understanding, the kind that makes me want to cry from joy.  I keep going even when I'm declaring I can't because sometimes, most times that is the only choice really.

It's been such a busy month.  The boys went to diabetes camp. Sugar Bear was extremely reluctant to go but ended up having a blast.  He made a few friends, Ryan being his best bud.  The older kids thought he was cool.  The counsellors loved him.  And the doc and nurse said he didn't really have homesickness like the other new boys in his cabin.  And the award he got at the end of the week was "Go With The Flow".  He had a cabin of 7 other boys and he said there were lots of joking and goofing around.  He did lots of activities, including playing Gaga, color wars, low ropes, wall climbing, tie dying, etc....he did not do the horse back riding, anything super messy like slip and slide or mud tag, or BB guns or archery.  One of his favorite jokes he told me from the week was "What are the tallest buildings in the world?  Libraries because they have many stories."  Of course now if you ask him if he's going back he says no.  When we picked him up from camp we asked him what it was like to have everyone at camp have Type 1 or really know about it and he said "I felt normal."  Sugar Bear's biggest hesitation with going and why he wouldn't even hug me when we dropped him off is that the shots were going to be with syringes instead of the pens we use at home.  But he did it.  He actually did a majority of his shots during the week on his own (with supervision of course) and did all his finger pokes.  The only thing he's not doing any more is feeling his lows.  Not once did he feel them at camp.  This is why we want a Dexcom for him.  Anyway, I'm in touch with some of the Moms of the boys in Sugar Bear's cabin and hope to get him together with the kids he met.

I think Drago enjoyed the activities at camp and the counsellors and his Doctor had high praises for him.  He had a bully and a couple of other not so nice kids in his cabin that definitely colored the week for him.  He got "Best Newbie" award.  He didn't feel great at camp because he is still in the honeymoon stage of his diagnosis so had a lot of lows to deal with.  He didn't do horseback riding because he had to have jeans and I of course forgot those.  I know he was also a little irritated that Sugar Bear seemed to make friends with the older kids easily.  He's not sure if he wants to go back but also realizes how difficult it would be to go to a different camp where all of his care would rest on him.  He said he doesn't see how he could do Camp Kern right now.  He did great with his care at camp.  The doc said he did all of his shots and even used his belly!  (Both boys have refused to use the belly with me.). The Dexcom was a huge help but it fell off on Thursday and they had to put a new one on.  Drago needed help and the placement wasn't good.  We had to take it off on Wednesday when he got home due to it hurting (a day early) and when we removed it there was a lot of ick.  So we took a break for the moment on the Dexcom.  And of course he got sick so he's not the easiest to deal with when sick.  One of the things that he has been doing since camp is doing something we don't necessarily agree with with his diabetes care only to have him tell us "I got this." Or "Well this is how so and so did it at camp."  Definitely fostered a lot more independence (for both). 


For us it was a much needed break.  During the week we realized that the only time we've had together alone since Sugar Bear's diagnosis were the hours My in-laws gave us for dinners when they were in town.  A total of maybe 6 to 8 hours.  So camp week was very necessary for us. We both slept, a lot!  We texted things besides blood sugar numbers, carbs, and insulin doses to each other.  Although early in the week Hubby was trying to text me how much money we had on the card and his phone autocorrected card to carbs.  So even the phone was missing the boys.  Lol. It was hard to go from 24/7 care to not even knowing anything at all about how they were doing.  But we enjoyed ourselves.  We watched movies, went out to eat once, went and saw some artwork, visited with friends, and of course I worked all week.  I also felt a little guilty from enjoying our break knowing the boys will never have one from the constant care unless there is a cure.  And of course we slept.

Overall, I think it was really good for all of us!  Thanks so much to my in-laws who made it all possible.  The smile on Sugar Bear's face when we picked him up on Saturday was amazing.  He really bloomed at camp.  And it was a space I can feel comfortable knowing they were cared for.  I even got great logs for both so I did get to see how their blood sugars were and how many carbs they ate and how much insulin they used and treatments for highs and lows.   Sugar Bear's comment that he felt normal brought tears to my eyes and pretty much summed up the week for me. 

Since then it's back to the grind.  Back to the balancing juggling act that is our crazy lives.  We took the boys to the drive in to see Minions and Inside Out.  We've visited with friends, attended an engagement party, and done the typical kinds of things people do in the summer.  
And we did a 7 day trial Dexcom on Sugar Bear because our insurance denied coverage for one for him.  Don't get me started on that.  Let's just say I'm not very happy with the hoops for him.   We had to go to the hospital to have our nurse put it on (even though I do Drago's all the time).  The insertion hurt and bled and then fell off on the walk to the car.  So back in for another insertion.  Then it wouldn't start up.  Took three stop sensors and starts when I called the nurse and found out the transmitter and receiver had different numbers.  Finally got it working.  It was a frustrating and stress filled day so we went for ice cream.  That helped.  Anyway, having the Dex on both boys was nice.  It relieved some of my anxiety.  It didn't last nearly long enough.  Last night we dealt with hours of lows with Sugar Bear.  It was scary and a Dex could have really helped.

So now we are gearing up for Sugar Bear's homeschool assessment and the beginning of a new school year for both.  

Time to Fly

We dropped the boys off at Type 1 Diabetes Camp on Sunday. They will be there until Saturday.  I'm not going to lie, this was one of the hardest things I've had to do recently and yes, I cried off and on on the way home, especially seeing their life saving kits in the van minus them.  Surreal.  Those kits go everywhere, they are always attached to them or within reach.  We never leave the house without them.  They literally save their lives daily.  I know that sounds extreme but it is true.  Those kits have insulin and without it they would die.  Those kits have fast acting sugar and without it they would die.  Those kits are the tools that balance their lives.  And they don't have them while at camp.  Instead we are relying on counsellors and nurses and doctor's to take the place of us and those kits so the boys can have a week "off".  They'll never really get a break so this is about as close to one that they can have--no kits attached to them.  Surrounded by people and kids that know what they are going through.

Sugar Bear didn't want to go.  He's never really been away from home without one of us with him.  Yes, Drago is there too but he's with the older kids.  Plus only his Dad, his brother, my Mom, and me have ever given him his shots and tested his blood sugar.  He's the one I'm worrying about.  I'm sure he's in capable hands but his lows recently have been low lows (39, 47) and he's not really feeling them and then the fact he had three focal seizures last year and the increased activity.....well, makes my stomach tie in knots.  Had we gotten the Dexcom in time I might not feel this anxious.  I'm not terribly worried about Drago.  Drago was excited to go.  

The silver lining is that I'm already more rested and have been able to connect with my husband without Type 1 rearing it's ugly head.  I'm working through emotions I haven't had a chance to address since Sugar Bear was diagnosed.  It's a growing experience for all of us.  The mama bird pushed her babies out of the nest hoping they will fly.

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.

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.