Saul during a diabetic high (video)

One of the 500 reasons I hate Type 1 and what we've been dealing with here lately....

Diabetes Jekyll and Hyde

If you don’t suffer from some kind of neurosis prior to a T-1 diagnosis you certainly will after.

“But he looks great”

“He doesn’t look sick”

“You’d never know anything was wrong with him”

“He must be doing a lot better”

I’ll admit, I was probably the most naïve of all of us when it came to understanding Saul’s diagnosis. I know I’ve already discussed it- but when we were told Saul was “diabetic” I was like “uh. okay,” and kinda shrugged my shoulders.

My initial gut reaction was “God, it’s not that bad.” I still remember thinking “well… no more sweets” and “so he has to take shots… I can give shots” and there are tons of people walking around who are diabetic… (I mean… granted they’re all OLD)… but really, “What’s the big deal?”

I know that so many of you out there think the same thing… and feel the same way… because seriously… sometimes those same thoughts still creep up.

.… and sometimes I hear/and am part of conversations that go like this…

(speaker): “you know (so and so) is diabetic and they’ve had it for years….  and they’ve never had any complications. They live like a normal life and are fine. I don’t know why you get so upset about Saul having diabetes.”

(speaker): “yeah, we have all kinds of diabetic kids at our school so it’s no big deal, they just go to the nurse a lot.”

(speaker): “they have a pump and you’d never know it. They never make a big deal about any of the stuff you ever talk about.”

(speaker): “why do you make such a big deal about diabetes… so he can’t have candy and sweets-it’s not like it’s the end of the world.”

(speaker): “yeah our cat is diabetic. We have to give him shots. How cool is that that- our cat and your kid.”

 

Do I want Saul to walk around sick all the time- teetering between ketoacidosis and hypoglycemia? Do I want him to live a life of surviving one coma to the next…  one seizure after another?…. Do I want to constantly blog from ambulances and hospital rooms… just so I can prove to myself and the world that living with Type 1 diabetes is in fact, a life-threatening, inescapable disease that we all must learn to manage and control?

Counting every carb in every bite of food that enters his mouth, calculating doses of insulin and giving injections, waking up 3 and 4 times in the middle of the night EVERY night to check blood sugar levels… these things are easy in comparison to attempting to explain Type 1 diabetes in a toddler and how it effects that individual and their loved ones.

Several events have transpired since that “Debbie- Downer- Walking- Dead” post.

I had a thoughtful (albeit unfinished) conversation with my guru Ashley. I pondered similar thoughts outlined by Type 1 blogger Kerri over at Six Until Me. I spent several days this week suffering through “sick day management” while I myself was sick. I’ve dealt with a few too many hypo episodes following this last change in Saul’s insulin regiment.  

 

I know Type 1 Diabetes doesn’t have to be a death sentence…

But it also doesn’t mean settling.  

 

November is Diabetes Awareness Month.  I feel compelled to advocate. Not just for Saul, but for everyone out there affected by this crazy disease – whether they look sick or not.

You can help Saul and others by educating yourself- something I wish I’d done before January 27^th. 

How to survive the Zombie Apocalypse... or... everyday life.

“You realize, Courtney, Saul will never survive the Zombie Apocalypse. There’s no way we can ever keep him alive.  I think he might make it for a few days… but that would be pushing it.”

About a month or so after Saul’s diagnosis – and several weeks into blogging, I asked Sebulsky to write a “guest post.” I thought it would be clever- and funny, if he wrote about one of his obsessions, and how his carefully thought out, detail- oriented plans, would work now that our lives included a chronically ill toddler- one that is reliant upon a synthetic medication- in order to stay alive.

I remember plain as day – the two of us- sitting there across from each other in our recliners- following that Sunday episode of Walking Dead- when we both came to the realization that “hypothetically speaking…. Saul would be a goner.”

It was early into his diagnosis. We were still on insulin injections. We were averaging 15-20 BG checks a day. I was still angry. I left the conversation… and my recliner. I went to the bathroom to cry.

I cried because I wouldn’t be able to save my son from becoming a zombie.

 

 

Saul has been doing really well lately.  Sure- we’ve had a few highs and lows (a donut AND a biscuit in ONE DAY… HELLO!…. 2 hours of running outside non-stop without pump suspension or temp basal… WHATDA YA EXPECT?).

 

It’s when things are somewhat normal, when levels are good, and we’re just chugging along… smiling and happy…. That’s when I say to myself… “Yeah… but he’ll never survive the Zombie Apocalypse.”

I know. I know. It’s stupid.  

#1. While Jeff likes to talk about it… a lot…. I don’t really believe it will happen… but then again you never know.

#2. What is up with my pessimism? Why can’t I just enjoy the moment for what it is- soak in the “good times” and not anticipate the “what if’s?.”

Maybe it’s because

We live in a culture of fear… fear which we cannot escape. TV shows, movies, news… we’re surrounded by it.  We’re overwhelmed by a constant reminder that at any moment our lives could be rocked by (fill in the blank) _____________________ (a natural disaster, a terrorist attack, an apocalypse, a crashing economy, a widespread plague).

 

There is no possible way I can prepare Saul for all the future obstacles he may face in life- with or without diabetes – and believe me… I’ve thought of nearly all of them.

-          Trapped in an elevator (okay… so actually trapped anywhere… for any amount of time… without insulin or treatments for lows)

-          Driving

-          Traveling- (to remote locations…it’s sometimes like being trapped)

-          Forgetting medical supplies

-          College (any and everything related to college…. I worry about college… yep… everything about college… let’s not talk about college… he’ll have an artificial pancreas by then… right? Right.)

I could go on and on and on… stupid, ridiculous “self-created” situations and events…. “he would die on a stranded island” (but wouldn’t most of us?) “he won’t be able to live in space” (but would he want to?)

on… and… on… and on….

Or, I could just stop living in fear.

I can teach him (and everyone around him) how to treat and manage his condition. I can teach him to advocate. I can teach him to problem-solve. I can teach him to prepare and plan and be responsible.

I could just stop fearing diabetes and the “what could happen” because of it.

 

It seems like the most logical action.

 

So why can’t I just do it? 

Coming Soon! "DIE PANCREAS DIE!"

Starring: Saul's good for nothing, lazy pancreas

A couple short clips have been provided for your viewing pleasure. 

Hey- if you like action- it'll be right up your alley.



Oh... an update on Saul?

Well apparently his lazy, good for nothing pancreas is approaching the end of his life- which is the explanation for last week's diabetes drama. Saul is coming out of what's called "the honeymoon period." Since diagnosis his pancreas has sporadically "worked" on and off... Though my definition of work and "his" definition of "work" vary greatly. Dr. K likened the analogy to a lawn mower reaching the end of the summer season- as it gets down to the last little bit of gas... it kinda sputters and sputs. That's what Saul's pancreas started doing last week. "Sputtering and sputting" out insulin at random times for no reason- this coupled with the insulin I was giving him (because you... know... I've been doing MY job PANCREAS...) was causing those hypo episodes. Hopefully... fingers crossed (with bow and arrow, shot gun, giant bolder, and missile’s ready) pancreas will just go ahead and kick the bucket... I mean... I don't wanna take him out... but after last week (and my stint of target shooting on Saturday) I'm pretty sure I've got the upper hand.

Don't worry! Don't worry! I'm just trash talking...

Oh. and no pancreas was hurt in the making of this movie.

 

There's no drama like diabetes drama... and I've got it.

I'm pretty sure if I didn't have two napping angels sound asleep in their cribs right now - I'd be screaming profanities at the top of my lungs and possibly throwing a few random objects.

I can't even describe how I feel. It's a mix of rage, anger, frustration, disappointment and helplessness... but really more rage and anger.

Coming off of Monday's seizure during naptime- I've been just a wee bit anxious about his numbers- especially since I'm not even sure how low he actually got- and am still confused by what happened and why it happened and how it happened and seriously... a BG reading of 105? what? that’s not low? so how? huh? really?

I have yet to "talk" to someone from UK. I was sent basal adjustments through an email which I've made- and which have helped... but honestly I felt better when I was running a temporary basal at 70% (even though it was causing him to run high, appear sick, lethargic and have higher than normal ketone readings).

The MySentry is located in the living room with the outpost in the hallway outside his bedroom. I slept on the couch last night so I could watch it. While I intended to do BG checks every 2 hour - I somehow managed to only check him 3 times between 11:00- 8:00. The CGM data shows him dropping (to below zero) between 1-8. As I told Dr. K today... my only true way of knowing an accurate reading is to check him every hour or two... but I'm not sure how long I can keep that up. I woke up this morning at 6:30 and felt sick to my stomach. I wanted to puke or punch someone when I saw the "silent" alert going off on the MySentry "low predicted." How do I deal with the guilt of him possibly having another seizure while I force my own body to shut down and rest... knowing I need it for my own mental health. 

The drama continued this morning. BG reading of 165 upon waking up. Exact carb count (weighing each and every bite of breakfast) a bolus of 11 carbs with a correction factor... 20 min later CGM alarm... 394. 5 min later Saul yelling "low" (though he was really high) because apparently the symptoms feel similar to him and he has a strong desire to eat and drink with both highs and lows... I correct the 394. 5 min later he wants a banana- I bolus. 5 min later he wants an applesauce pack- I bolus. An hour later I witness what I can only describe as "an out of body-mind flip out experience." My guru Ashley has talked to me about some of the behaviors that can happen with both highs and lows and apparently this was my first real witnessing of that. Generally I joke about Saul "hulk-ing" out with highs where he gets angry, mad and fussy... but what I saw today was something similar to the exorcist.... even I was scared. He started sweating profusely, his face got beet red. He started pounding his fists on the table then pounding himself on the face and head. I grabbed him and he swatted and hit me. He threw toys and a fork. I checked his BG it read 160. Bizarre I thought to myself... Maybe this is some crazy temper tantrum... but it came on outta nowhere- he wasn't provoked... he wasn't upset. It was random. I quickly grabbed the control solution and tried calibrating the meter. I checked again- same finger- BG 232. CGM giving no alerts. At this point I picked him up- much like I used to pick up our cat Broni after I’d attempt a bath. I sat him on the couch. I turned on Cars toons. Thank God for STARZ On-Demand and I walked away. He calmed himself down. I went and made lunch. Minutes later its like nothing had ever happened.

At 11:30 lunch was ready. He ate ham, not even 1 strawberry, not even half a Wasa cracker (5 carbs) , cream cheese, 2 grapes. BG 136. As he is eating CGM starts alerting it has him at 176 two arrows down. I decide not to bolus lunch. I mean... I'm scared if he's really dropping and getting ready to nap... don't want a repeat of Mon. He eats. He plays. CGM continues to alert "low predicted." I give him maybe 2 oz of milk... again... no bolus for it.. CGM alerting low... I lay him down in his crib. ----Every time I put him to sleep now I tell him "Saul you yell Mommy if you start feeling how... you yell for me... okay." -----He generally says "tay" then rolls over... waiting for me to leave. He prefers to sleep solo... believe me... I've tried forcing him to sleep with me for my own satisfaction and piece of mind.

Meanwhile... I'm slightly concerned about a problem that has actually been going on for quite some time. As in... I can't even remember the last time it "didn't" happen. It's become so commonplace that at some point it I assumed it was normal- though I know it's not. Saul can not manage to make it through a 2 hour nap without his diaper soaking through clothes and bed sheets. He gets changed every single day and sheets washed nearly every single day. He is changed at least once if not twice in the middle of the night for excessive urination. I realized today... we need to address this. If his BG's were high at night- it would make sense- his kidneys would be working overtime to excrete- but he's not running high... if anything he's running too low. I never check ketones at night because of this... yet he's urinating like he's running high BG's all night. I'm so used to the process of changing diapers, clothes, sheets that I don't even care it happens- I just need answers. The thought of his poor kidneys taking the brunt of diabetes is a bit too much for me right now to handle... so I'll just shelve that to the back of my brain file and move on.

Matter of fact... I'm going to just push all this to the side right now and go do some laundry... or clean my bathtub... or put away toys... or do anything that forces me to not think about diabetes.

This is what happened.

I heard the screams first... the gut-wrenching, blood-curdling sound of thrashing and terror. I came running down the hall. I had just put dinner in the fridge - "Firecracker Chicken" and "Collard Greens." I knew it was you. Trip stayed sound asleep. I saw the fear in your eyes and I froze. I saw you contorted, spasing and desperately trying to gain control of your body and mind. I wanted to run away because I was scared too but instead I immediately grabbed you. Your distorted fingers clamped onto me as I felt you thrust uncontrollably against me. I cried out your name. You couldn't respond. I ran through the house with you clinging onto me and grabbed your juice from the back room. I poured it all over your face. You choked and spit it up. I wept as I held you in my arms. You half cried-half vomited up the words "Uh-Oh" as your body jerked and twisted violently. You didn't know what was happening to you. I should have told you. I should have explained. You were scared. I was scared... all I could do was hold you and cry out. "It's okay Saul. It's okay Saul. It's okay Saul." I held you and with one hand dialed Daddy's number.... I think I yelled "emergency come home" but I'm not quite sure. I had to set you down on the couch to call 911... which frightened you even more. I promise I won't ever set you down again. You kept saying "uh-oh" each time you felt your body abnormally twinge and shudder. They asked me how long it lasted. I wanted to tell them a lifetime. I think it was a matter of minutes. Daddy witnessed the end of it. When we were able to check you... you were 105. I was confused. The EMT's were so nice. One told me his wife was Type 1. He let you look at all the cool knobs and gadgets on the equipment. You really liked the "glowing finger pulse reader thingy." They asked you what you liked and you smiled through your bop bop and replied "dump cars." When you felt better you played cars with them on the living room floor. One of the EMT's used your foot as a car ramp and jumped your favorite monster truck off your leg. You laughed out loud. I felt the same way I did the first time I ever heard you laugh. Then we talked about seizures. We went to the Emergency Room. The check-in lady laughed because you had a cell phone in your pocket... then apologized and said she was really sorry when I told her it was your insulin pump. She said she felt really sorry for you. I wanted to tell her not too- but at the time I felt sorry for you too and that made me sorry as well. Two different nurses asked if I was Type 1. I told them no. They said, well who in the family? I said you. They said how? I said "just lucky I guess." I wish you hadn't been so lucky. I wish I had better luck. I wish I had it. I wish I could take it away from you. I wish I had it with you so I would know what it's like- so I could better understand- take better care of you. Everyone at the hosptial of course loved you. You "marched" with the nurse around the Nurses’ Station. You blew kisses to the Dr's. I saw them crack smiles. Even the most serious of people sometime need a release. Your nurse went and found you a "present." She brought you a Cars puzzle. You said "McQueen" I always correct you and say "NO... RED NOT GREEN." All this time you've been saying McQueen and I thought you were saying green. It felt like a breakthrough. We tried watching TV. There were no kids shows. We looked at lots of buttons, do-dads, gizmos and thingy's on the bed. We destroyed the sheet. The Dr. said you would be okay. We didn't do CT Scans. He said you were way to low. I called UK immediately. I wanted to rip the pump off. I knew if I did we'd be back in the hospital with DKA. You kept saying "go go go go go" while the Dr. was talking to me. We left soon after. I asked if you remembered what happened when we were walking in the parking lot. You just smiled. I said do you remember the ambulance and you went "Nee-haw Nee-haw Nee-haw." I got in the car and felt a gush of tears flooding my facial cavity. I was afraid if I didn't close my eyes tight I might wash us away. I opened my eyes and the urge to cry was there but nothing came out. I drove home. You watched Bubble Guppies while I drove and I thought to myself... I have failed you.

Somebody’s got a case of the Wednesdays

So, I know you know this scene.

You know this one... from Office Space? Where the three of them are busting up that printer-thing? Kicking it... hitting it... smashing it...pouring out their rage, frustration and anger on it.

If you're like me- you've watched it a million times (more than likely on TBS) and even though now dated... it's a classic and will never get old...sorta like "Christmas Vacation .... but just in case you live in a bubble and have no idea what I speak of (uhh.. hm.. Ann Grimes) - I went ahead and embedded the link. Oh and note: PARENTAL DISCRETION ADVISED

Annnnnnnnnddddddddd.........that pretty much sums it up.

That scene has played over and over and over in my head since inserting Saul's stupid CGM this past Sunday morning.

I even went so far as to say in front of Harper last night in a moment of insanity (and in a hicky- redneck accent nonetheless) "I'm gonna bust that thing up."

I hate it. I HATE it. I haaaaaattttttteeeeeee it. I hate it for sooooo many reasons.

1. It sucks.

2. It doesn't work.

3. Inserting a stupid giant-darning needle 2 inches from the belly button of a screaming toddler is ridiculous.... especially when it doesn't work... and always always bleeds... no matter how many times I follow the 45 degree angle "then tilt just a little cause he's so tiny maneuver".

4. It sucks.

5. The amount of tegaderm and now drape dressing it takes to keep that sucka where it needs to be is even more ridiculous than the process of inserting it.

6. It doesn't work.

7. It makes my kid wear overalls 24-7 (okay... maybe this isn't so bad...he's pretty adorable in them).

8. It sucks.

9. The incessant beeeeeeping... the beeping... dear God the beeping.... the never... ever.... ever... ending... beeeeeeeeeeeeeeeeeping... through the day.... through the night.... it never. ever. ever. stops.

10. It doesn't work... oh... and it sucks.

I keep telling myself to stick with it. I try tweaking ranges. I try changing sites. I try adjusting my attitude. And folks... I'm a pretty patient person. I can handle quite a bit of non-sense... I'm not lying... this thing would put most of you over the edge and out in your yards pulling an Office Space scene.

I know eventually when the artificial pancreas is approved by the FDA and the closed loop system is out there on the market that we'll have to deal with CGM (and lord knows probably more)... but some days.... and some nights... that stupid little "monner" (as Solly says) brings me to do ridiculous things.... like... I don't know... wake up around 5 a.m. dig around the night stand for earplugs... stick them in so I don't have to hear the monotonous beep then fall into a deep glorious sleep... only to randomly wake up and realize... then recognize "that" beep... "low predicted"

Jumped outta bed this morning at 5 to find Saul awake... laying in his crib with a BG of 50.

After he came out of his low... and was laying there... he said "Mom..... pump go ehhheehhhheehhhheeehh" (his version of the beep beep beep beep). I said Saul... I'm sorry dude... is it making you crazy? Are you gonna pull your own Office Space scene in the middle of the night? Rip off those rompers and hulk-smash your tummy?

He just stared at me... craacked up laughing... then rolled over on his side and went to sleep.

ahhh... kids... they're so funny.

Solly proudly showing off his "monner"

Sometimes I wonder.

During a daily twitter check, I stumbled across a girls you-tube video about non-diabetics supporting those with diabetes. She looks to be in her mid-twenties and she offers advice (I'll paraphrase) "don't nag" "ask how to help" "be patient." I gave it a re-tweet and "liked" on Facebook and now I'm sitting here thinking about what she said.

I've actually been thinking alot this morning... mainly about the future - Saul's - and... mine.

I thought to myself... man... I wouldn't want to be his pre-school or Kindergarten teacher. I mean... come on... if you think those folks have it easy... well... go observe some classrooms. I keep thinking... if his BG doesn't get regulated and it seriously continues to be a 24-7 managment of highs and lows what in the world are we going to do with him? Where will we send him? I'm not going to send him to a classroom with 26 other 5 year olds. What if he's like his Dad... and just "deals with things" never tells the teacher when he's feeling high or low cause he doesn't want to bother anybody or get in trouble. What happens when other people (lots of other people) witness his crazy personality changes... "hulking out" at high numbers and slipping into a quiet lethargic state during lows.

Will he be proud to show off his pump and monitor to all the kids on the playground. Will he be embarrassed and hide his pump and tubing so no one sees. Will he be sneaky and sometimes use diabetes as a means to go to the bathrrom or sneak candy who shouldn't eat?

How much should I be involved? Do I let him advocate for himself starting at a young age? Should I stay on him constantly about taking care of himself. Should I expect daily reports when I'm away from him?

I'm not a coddler. In so many ways I'm a hands-off kinda Mom... but how do I balance supporting him- teaching him- loving him without letting the "Big D" get in the way of a normal mom-son parenting realationship.

The "rough patch" that started about a week or so ago continues. The 24 hour My Sentry reading is ridiculous. I can't help but feel guilty like it's my fault... like maybe I'm not counting carbs correctly... maybe I'm waiting to late to bolus... and I can't help but wonder... will he ever feel guilty? Feel guilty for eating one too many cupcakes... feel guilty for being "difficult"... feel guilty for causing others to worry, stay up late, needing help... or worse... will anyone else ever worry? Will his teachers care.... or be frustreated that they have to deal with him... dread getting "that one."

How do I raise him to let the guilt go... to just accept it and move on. How do I raise him to laugh things off and find the humor in the cards we are dealt? Maybe I need to start with myself.

$4.00 therapy day

It’s 10:30 p.m.

Sebulsky is pulling another long night at the office and I’m sitting here finishing off a bag of .99 cent pork rinds and a $3.00 bottle of merlot while trying to find some deeper meaning to life.

Feelings. I seem to have an overabundance of those lately.

Which is why I just haven’t been able to hit that publish button… delete makes much more sense.  

So I’m going to vomit out some sentences that probably won’t make sense… and should really just be scribbled in a journal marked “for my eyes only” hidden in a bed side drawer….. BUT…. because it’s the digital age… and social media is all the rage… and I battle with insomnia…  and I can’t stop eating these pork rinds... yep… here it comes….  

Harper:

Harper starts Montessori tomorrow. We have to wake up early. I dread it. She’s nervous-  an emotion I’m not sure I’ve ever witnessed from her before - which makes me worry. She’ll do great. It’s just me.

I wanted things to go smoother on the first night before school… fix a favorite dinner… go out for orange leaf… read “the night before the first day of school” have her journal her emotions… what she thinks it will be like, what she’s excited about… nervous about…  give her a heads up about the schedule and what tomorrow will “look like.”

I expected her to be in bed at 8:00.

Instead

I forced her to lay down and stay down at 9:00. I took her book away at 9:10 which resulted in tears. Saul began wailing at 9:15. He went to bed with a BG of 380… which means I’ll have to get back up to check him and ketones in about an hour. His site should have been changed today but I didn’t do it.

She went to sleep. crying.

She went to sleep crying on the night before the first day of school.

Saul:

One of the hardest questions for me to answer from folks is “How’s he doing?”

I typically say “aww… he’s doing good” or “we’re adjusting” or “things are getting better… the pump is great.”

That’s what I said to my neighbor on Saturday, Mike the Pharmacist on Sunday and my co-workers at school on Monday.

I generally think most people assume I exaggerate his condition. Sometimes I even question myself. Am I over cautious? Is he sick? Should I have forced myself to go back to work? Has he ended up in the hospital?  Are his A1C’s bad? Has he gone into DKA?  Diabetic coma? Are we not “managing” just fine?

And then… it will happen.

Out of the blue.

When I’m off guard.

When I blow off his situation.

When I forget.

I picked up Harper and MD this afternoon from a play date with Isla and Julia. I thought Saul was acting strange in the car on the ride home but I chocked it up to needing a nap.

I got the girls out first. When I went to get him out I noticed he looked bad… terrible actually. I picked him up and set him on the sidewalk and he fell over. I kinda chuckled and told him to get up. He whimpered but didn’t move… I picked him up and he went limp. lethargic. lifeless.

I carried him to his crib. He was unresponsive… no talking … no crying. Sweat was pooling on his forehead, dripping down his cheeks… his pillow was wet.

40.

I grabbed the skittles off the dresser and shoved them in his mouth. I grabbed his hand… he didn’t even squeeze.

This wasn’t his first low. But. This was the first low he’s had where he was scared.

It was all in his eyes and eye movement. He was terrified. It was almost like he had no idea what was going on.

It’s been the worst episode yet.

It took 45 min to get him up to 111 at which point he fell asleep.

He woke up and was 61.

I suspended the pump.

He was 350 an hour later.

Some days I wanna say “he’s not doing good” some days “we’re not adjusting” some days “things aren’t better” some days “even though the pump is great… I still have to be his pancreas and do all the work.”

Me:

It’s easy for me to get hung up on stuff, to question myself, doubt my decisions my actions or lack thereof- it would be nice if I got hung up on all “the other” stuff.  If I focused on how great my life is. If I publicly acknowledged how much I appreciate an amazing, hard-working husband who is a fantastic Dad… If I expressed my gratitude to both sets of our parents who still come to our rescue when we need them…  who…  without them… the life I am currently living would not be possible.  

It’s 11:30 p.m.

I’m scraping the bottom of the pork rind bag… only crumbs.

The last sip of my gas station wine is gone.

Jeff is still at work.

Both kids are sleeping.

I’m calling it a day. I’m calling it a $4.00 gas station therapy kinda day.

Taming the Beast

I somewhat feel guilty for being glad things got worse… I had really started to doubt myself after Saul’s BG levels miraculously started leveling a few weeks ago- couple that with an “excellent health report” from Dr. Irene and night upon night of endless, glorious, uninterrupted SLEEP… and I started thinking…  “Maybe we jumped the gun?” “Are things really bad enough for me to take an entire year off?” “Perhaps I could go back to work in a few months… say Oct?” and then… as spontaneously as things “had” improved… things “returned to the normal” we’ve grown accustomed too since the day of diagnosis - the never ending drama of constant ups and downs, the blips of “too high” highs and “too low” lows. As if this wasn’t reassurance enough… I felt even better when Sebulsky said last night out of the blue… “We’ve made the right decision.”

So since I practically vomit out my life on FB I have little to add to what I already discussed about yesterday’s hypo nightmare. If you’re living a life of neglect and do not use FB… here’s a recap.

After changing out Saul’s insertion site and CGM sensor we sat down to lunch. I did a half-A job of counting carbs and “guesstimated.” Because he’d been running so high, and because we bribed him with candy during CGM insertion,  I erred on “over” bolusing for lunch.

He lays down for nap. Harper goes to sleep on couch. 20 min later he’s still awake. I hear a thwap then a thunk then chuckles. I peek through the door and find CGM sensor & transmitter laying on the floor… he’d pulled off the tegaderm, ripped out his CGM and flung it across the bedroom floor. Most concerning is not the fact that he did it… but rather that it cracked him up… I fear he may find this form of entertainment so delightful that we’ll have to duct tape the sucker to him… At any rate I laid him back down and shut the door.  

An hour  or so later I was abruptly woken by a shrill, blood-curdling scream . Harper jumped up and said “I’ll go check on him.” A few minutes of silence went by (a rarity around here) and I actually thought that maybe… just maybe… he’d either gone back to sleep or they were quietly playing with stuffed animals.

I walked in to find Saul still lying down, red, sweating and totally lethargic.  His body was limp and he was unable to sit up. I immediately ran to get his meter – I actually thought he was headed towards DKA… since his numbers had been so high. Instead I was shocked to find his BG at 50. I again left Harper with him in the crib and got his juice. Because he was unable to sit up I had to literally open his mouth and squeeze the juice in. It was gone in a matter of seconds. Typically he comes “out of it” after the first sip or two… starts perking up… this time he remained lifeless. I ran back for more juice… thinking maybe I should grab the glucagon just in case. I resisted the urge to poor more sugar down calmly telling myself… wait… wait the 15 min… At which point I re-checked his BG to find he’d dropped to 45.

I won’t lie… at this point I was pretty scared. I ran back and grabbed another juice, a pack of fruit gummies and the pushpop we’d lured him with earlier. Amazingly… after all that sugar intake in only 30 min or so… his BG was still just 91- which is considered low for him.

It was on the 3^rd juice box that I got him to sit up. By the 3^rd or 4^th gummy I could get him to talk to me. By the time he’d made his way to the pushpop he was throwing cars at the fish tank… at which point I let out a huge sigh of relief.

I have replayed the entire scene in my head several times thinking things like … what could I have done differently… what needs to be in his bedroom in an emergency kit in case this happens again… I need to teach Harper how to dial 911 and what to say, I need to teach Harper how to give him juice if this happens again, I need to teach Harper how to check his BG… Is it too much pressure on her to act as my emergency contact person… she is after all only a mere 4 years old.

If you know her- you’d probably say no. She was pretty amazing yesterday-   and the fact that I relied on her to stay with him while I ran to get stuff says a lot. I said Harper just keep talking to him and hold his hand. While certain events are still blurry to me… I do remember vividly how funny she was… she said “Solly… you just listen to me little buddy… Once upon a time… there were Little Einstein’s…”

A few months ago I would have lost it. Ended up calling 911 and had an ambulance on its way… but I channeled some “get your crap together Grimes mojo” and just pushed the sugar. I don’t really get those sayings I see all over pinterest… the “Stay Calm and ______________” sayings… however yesterday I kept repeating… stay calm and cram sugar… stay calm and cram sugar… lol. Maybe I’ll jump on the “stay calm” bandwagon.



Don't worry... I didn't document in the midst of a diabetic emergency... this was the aftermath... pump suspended, candy everywhere, empty juice boxes... lancets and meters... I thought it kinda "nicely summed things up" lol.



I just realized this is an incredibly boring, poorly written post.

Should. Stop. While. I’m. Ahead.

But will end on this note.

I saw this in a book last week and I couldn’t agree more.

I'll admit it.

I used to be one of “those” people.

I used to think… “Diabetes Smiabetes what’s the hoopla?”

Then I see what the beast can do…..

However… recently… instead of being afraid of the big D beast I’ve come to a point where I’m feeling kinda motivated to kick some big D beast butt… I’m cleaning it clean for you Mom.  

I cue the music in my head

I close my eyes

I slap on my gloves

I gobble some egg yolks

Okay… I won’t lie… I’ve never even watched a Rocky movie… but today seems like a good day to start. 

Diabetes Sucks.

As promised… okay… well… maybe not.

Diabetes sucks.

Period.

Sure, there are a lot of things in life that suck. But right now… Diabetes is on my #1 list of ultimate things that suck.

Anyone out there tell me why… why would your blood sugar level rise into the 300s from 1:00 a.m. – 4:00 a.m.?  after insulin… even when you’ve had no food for hours… when the insertion site has been checked and changed… when there is no evidence of fever, illness, teething?.......... Why?

Why?

Because diabetes sucks.

That’s why.

Because diabetes likes to keep me up at night.

Because diabetes likes to keep me guessing.

Likes to keep me frustrated.

Likes to keep reminding me that we’re both in a constant struggle to control poor little buddy’s body.

And right now… unfortunately…. diabetes is winning.

I’m not complaining that I have to stay up at night taking care of him- I like to think of it as “late night bonding” but if it were up to me… I’d rather it be over popcorn and Pixar movies.

It’s not so say everything is bad right now. I am purposely planning out special “things” for us to do so that I remind myself- life is not just about sticking fingers, counting carbs and needle insertions. For proof- I posted some pics on Facebook yesterday.   

*Related note about the aforementioned pics* For those out there who may have diabetic toddlers, hungry dogs… or weird kids that like to eat inedible objects… try to avoid crafts that involve peanut butter, bird seed and pinecones because apparently it’s an irresistible combination.  

Recently it occurred to me (in the midst of EH assisting me with Saul) that this experience is not only forging a bond between Saul and I, but also creating a unique relationship between Harper and I and an undeniable, unexplainable connection between EH and Saul, one that can be witnessed in the wee hours of the morning as she runs through the house (on her own accord) searching for his bop-bop to pacify his incessant crying- one that is evident as she gently holds down his arms and caringly whispers to him “I’m here little buddy.. . it’s okay… just look at me… don’t watch Mommy… just look at me” as I insert yet another needle into his tiny belly.

 It’s sweet. It’s sad. It’s life as we know it.

Pumped up on something… excitement?, nervousness?, anger? rage?

Step 1: The initial creation of da… da… da… da…. DARTH SAUL

Sebulsky and I survived our “introductory” course training on insulin pumps today at UK Children’s Clinic.

I have spent nearly every waking hour researching insulin pumps and reaching out to my “FB support team” for tips, suggestions and what I like to consider “pre-consultation” advice. I posted a few videos on FB about insulin pumps because I’ve had quite a few folks ask me how it will work. We are currently lined up with Medtronic.  For the consumer report lovers out there check the link below.

http://forecast.diabetes.org/files/images/v65n01_Insulin_Pumps.pdf

I personally like the idea of the Omni-pod but we’ve been advised to not go that route because of Saul’s age and situation. After seeing it today I can understand how it might be beneficial for  young adults/adults but would be difficult to use on a toddler… looks like Medtronic it is.

A few things I expected to hear today (and heard)

You still have to do all the work (aka… be a pancreas….. arrrrgggghhh…. every time I hear those words I get angry and want to kick some pancreas.) -By doing all the work that means still gotta carb count, and give doses

It will make your life easier

It will give you better control of your blood sugar

It’s going to be difficult with a toddler (yanking out the tubing, changing insertion sets, sleeping situation, diapers)

Things I didn’t expect to hear (and heard)

It’s going to be very expensive (devices average $6,000 dollars… get ready for the insurance company)

You must keep the device for 4 years (like all technology… there will be upgrades but you are basically locked into a 4 year agreement once you choose a company’s pump)

Don’t “ask” your insurance company if they will approve an insulin pump. Let UK Children’s Clinic “fight” the battle then ask questions later.

Oh… and

I brought the most commonly used devices to the training day… the ones your insurance company will generally agree too.

So… that’s about it for now… gotta pause on the momentum till paper work is faxed, contacts called, insurance approves, etc. etc. I kinda jumped the gun and contacted Medtronic last week… ironically the guy emailed today during our class… I replied with “how can we expedite this process?” I’ve yet to receive a response. Heather our diabetes educator assured me it would be at least 3 weeks before we are trained on the Medtronic pump… so in the meantime… I will continue to read, research and rant.

I’ve yet to actually publish that post I wrote about my dealings with and feelings towards Humana. Maybe it’s because I know I’ll have more to add… maybe it’s that I feel guilty for complaining when I’m actually appreciative of having insurance… I know lots of people who aren’t so lucky. Maybe I just know the post is offensive and deep down I’m afraid I might actually… you… know… “offend” someone.  

I had the post on my mind as I was sitting in the Rite Aide parking lot yesterday (during one of my now weekly visits). Curious… I googled “most expensive chronic illnesses”- guess which one always makes the list?

I’m not sure I can put into words ----- or that you even want to hear the words I have to say---- after reading quotes from Forbes, the CDC and major news companies. 

After all the personal effort I’d put forth into “getting over” the diagnosis and “moving on” with treatments I found myself fevered, fuming and furious… ready to pick up the advocate banner and start waving in everyone’s face… shouting facts and statistics and screaming to anyone who would listen.  

My 17 month old son has a chronic disease that WAS NOT PREVENTABLE.  He will have to deal with this for the rest of his life… pay for it (literally) for the rest of his life.

Seriously… can’t they just come up with another name for Type 2 Diabetes… you know the kind you get that CAN BE PREVENTED…. like when you EAT BETTER FOODS… and LOSE WEIGHT…. The kind you get when you’re an adult and have lived over half your life enjoying  a diet of krispy kremes, twinkies and moon pies… things that my sweet boy will have to avoid.

I cringe every. single. time.  someone tells me they understand what it’s like… you know cause they know someone with diabetes… a grandmother. uncle. their 65 year old Dad.

 I mean… Seriously? Seriously? So you take Metformin, drink diet cokes and check your blood sugar once a day.. Yeah. Sure. Lay it on me… you’re an expert.

My problem with diabetes is that it’s become “common enough” (thanks in large part to Type 2 diabetics) to be passed off as “ahh… not that big a deal”…… that is unless…. you’re the pancreas of a child whose diabetic and YOU deal with the minute by minute management of a sneaky disease that doesn’t always make sense and doesn't always make you look “sick.”

And here I am worried about that offensive post against Humana and I’ve done gone on a tirade over Type 2 diabetics (there goes a portion of my viewing audience)*sigh*

I diverge.  While I could focus on some of my “still suppressed  anger “ I will instead leave you with the best part of my day.  Hearing these three words from parents of kids who’ve all been diagnosed over a year "It Get's Better."

The instant comradely I felt towards these total strangers was… well… strange… but oh so comforting as I watched them give insulin injections with ease and openly express the same genuine fears and concerns for their elementary school age kids that I have for my 17 month old baby.

I won’t lie. I’m still a little upset… I still have the occasional “outburst of anger” but I’m having fewer and fewer "moments of rage" and more and more “flashes of faith” and trusting that “it’ll get better” makes it all A-okay... especially when the advice comes from a sweet 10 year old girl sitting across the table who "know's what it's like."

Insomnia, FEAR and twitter. a random post.

What do insomnia, fear and twitter have in common? I’m not really sure but here’s my post for the day.

Insomnia and I are best friends. We just met about two weeks ago. He comes around 11 pm and refuses to leave my side till waking hours- say around 6-7 a.m. I guess I’m thankful for the company especially during Saul’s “night checks” but I’d much rather be hanging around my old friend sleep…. She was a much better influence on me and I liked her a whole lot better.

I guess really it’s my own fault. I know that I’m summoning him each night as I lie in bed and allow my mind to drift to “fears.” I’ve only got two but they consume every single ounce of me. Insomnia brings them out… makes them worse… won’t allow me to let go of them. During the day I’m usually okay because my attention is pulled in 50 directions.  At night, however… in silence… when insomnia comes… when there’s no one asking me to fill Sippy cups or play dress up or turn on Mickey… I lay there thinking, worrying, dreading… fearing.

2 things.

1.       Every single time I see those dreaded numbers. Those numbers below 70. Those numbers like… 65… 59… My adrenaline starts pumping, I want to throw up. I want to cry. I am so angry. I start freaking out.  There he lies lethargic, shaking, refusing to be held, touched, consoled and all I can do is wait… and pray that they go above 70 in 15 min. The wait is agony.  It’s 15 of the longest minutes of my life each and every time. And… each time his numbers drop I know it’ll be “this time.”  I watch for any possible signs- eyes fluttering, shallow breathing… I know that any second he’ll go unconscious... won't be able to swallow… It’ll be this time I have to use the glucagon… this time that I call 911… this time that I’ll have to hold him and wait… wait for the ambulance to come while he slowly slips away.

2.       In a thousand years I never would have put Type 1 diabetes and “neurodevelopmental  disorder” together in the same sentence. Sure I immediately worried about his eyes, kidneys and nerves… I have seen firsthand the damage that diabetes can do to a body.  But diabetes effecting brain development? His cognitive ability? Whoever stops to think about the relationship their stupid pancreas has on their ability to learn.

I can’t escape seeing the connection everywhere … in everything I read… every medical research article “The relationship between hypoglycemia and possible neuropsychologic impairment is of far greater concern for the very young child than for older children and adolescents. Many reports describe subtle neuropsychologic or intellectual impairments.”  I’m constantly inundated with the fear and frustration that I’ll have no control over a disease that will greatly impede his future opportunities. I want to scream at someone... I"M TRYING TO CONTROL HIS LEVELS.... BUT... BUT... BUT... NOTHING I DO SEEMS TO HELP... AND... AND.... AND... HE'S LOSING PRECIOUS BRAIN CELLS........ *sigh*slump*

On a lighter note… after reading  thisiscaleb.wordpress.com I feel so much better about turning to social media for assistance throughout this whole process. I was going through old posts on this blog and found a story from Lorraine who was recounting a trip with her 3 kids (one of which is diabetic) to the ballpark. She got there gave him a hotdog and couldn’t find the carb count in Calorie King… after a somewhat unsuccessful Google attempt she turned to twitter…. And was instantaneously hit with a thousand replies but even more important perhaps… she had the feeling of support that she wasn’t doing “this” alone.