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. 

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"

$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.

Toddler transformation

Well. I’m gonna go ahead and talk about it, even though I don’t really want to talk about it.
Our closest friends have witnessed it. Our pediatrician has now witnessed it…. twice. Jeff and I deal with it daily and often nightly….  and quite frankly neither one of us have gotten any better at handling it.

“It” would be the unbelievable, unexplainable, transformation from the sweetest boy I know into well… hmm… how do I put it… a raging, crazed, uncontrollable beast of a child.  

“It” comes on fast. As fast as his blood glucose rises and falls- “it” gives no warnings, lest a few grunts, grumbles and fussy whines. At first I used to be the one who was able to console him, calm him, almost halt the process but now it seems when he’s in the midst of “it” even I can’t calm him down.

“It” usually happens only when his BG is high – above 300 which unfortunately has been quite frequent. My internal clock is set by “it”. Because no matter what, “it” always happens…  on cue…  like clockwork between  12:45 a.m. and 1:00 a.m. Which also happens to be when episodes are the worst.

He hits. thrashes. lashes out. screams blood curdling screams. throws any object in reach (including his beloved bop bop ). He refuses to drink (crucial to treating high BG’s with large ketones). He rejects any form of physical touch. Our one and only saving grace and calming force is to set him down in front of Little Einstein’s and just walk away until “it” has gone away and he has returned to normal.

Handling this is difficult on a number of levels. It is mentally, emotionally and physically exhausting. But as of late, as things have progressively gotten worse I’ve become extremely sensitive to people witnessing the incidents.  I know part of it is my lack of confidence and limited experience and education in handling him during these situations. That part, I am working on. I know an even bigger part of it is the fear and embarrassment of being judged as a parent because of his behavior. I do also know, that in time things will get better, as  his language develops and his ability to control emotions  improves we may find ourselves dealing with fewer and fewer of these spells.

In the meantime I’ll continue to dread things like…. going out in public. 

Our pediatrician who has luckily witnessed two recent episodes concurs with me that the most difficult part is determining what is developmentally appropriate (“temper tantrums” are normal for his current developmental stage) and what is being triggered by the diabetes and his inability to communicate his body’s reactions to “highs” and “lows.”  It is suggested that we create a few non-negotiables no matter what the catalyst.  (like… umm… don’t slap your mother or throw iphones or ipads…. Lol).

I’ve read/heard a lot about behavior changes during hyper and hypoglycemic episodes and up until recently I guess I just blew a lot of it off…  now I’m starting to understand… and also starting to worry.

Jeff and I love Saul… and though taxing… we love him despite his mutant transformations… but I can’t stop worrying and asking myself…. will anyone else?