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?

  

Doc McFishin

In what I can only describe as a miraculous act of the almighty God above, Harper and I just managed to save a fish ¾ of an inch long stuck in between a cheap plastic plant thingy weighed down by gravel.

Needless to say, the successful rescue attempt managed (if only for 15 minutes) to bring me out of the depressive slump I’ve been stuck in for days.

I’m not sure if Jeff asked me if it was a sign… or told me it was a sign…

I know that for half a fleeting second I truly believed that maybe it was… maybe today, on this gloriously cold rainy Saturday…. maybe…. just maybe…. things might start looking up… getting easier… leveling out…

-But-

Our fish celebration victory was short lived.  The hugs and high fives were quickly forgotten as we dealt with two ridiculously high BG readings, a disastrous set change (freaking blood in the tubing AGAIN) and then….  yet… ANOTHER infusion set change all of 30 minutes later.

RAAAAAWWWWRRRRRR.  *sigh*  

Is it possible to feel rage and anger when depressed? I’m spending as much time trying to diagnosis my own feelings as I am attempting to figure out what in God’s name is going on with Saul’s little body.

Jeff randomly asked me the other day “What would make things better? What would make you feel better?” and my only reply was “I really want to shoot something.” Okay before anyone goes and gets all “crazy” on me… I’m not a threat to myself or anyone else (excluding two of the four legged animals in this house).

I guess I’ve spent the past week living in a constant state of frustration. Everything frustrates me. BG readings frustrate me. Not being able to figure out the cause of a BG reading frustrates me. Blood in tubing frustrates me. Changing sites frustrates me. Waiting while the medical team reviews data frustrates me. The thought of anyone else having to do this job frustrates me. And then you add in everything else in my life… laundry, bathes, cleaning, dishes, meals, getting out of bed… going to the bathroom…

Life in general is just frustrating.

But hey at least I’m still living… not broke yet.

Both kids are currently obsessed with “fixing” people. No doubt a combination of recent events mixed with daily episodes of Doc McStuffins. We’ve diagnosed, nursed, ambulanced, researched and doctored nearly every living and non-living creature in this house.

Our business is booming. I mean seriously…. Who can match our success rate of 100%?

“You broke? We fix. 100% Guaranteed. No… really… we ALWAYS fix you.”

During the regular fish feeding this morning when I noticed a missing fish I told Harper “things don’t look good… we gotta missing fish.” She actually laughed and waved her hand in the air blowing me off. I said “No…  really Harper, I think one of our fish might be dead. I’m going to have to get it out of the tank. We won’t be able to save it. It’s dead.”

“Oh Mom… I see it… down there… his head is bobbing. He’s telling us he’s okay.”

I looked and was not surprised to find a dead fish stuck in between the plastic plants at the bottom of the tank.

Again, in my attempt to ward off any hysterics, while being honest about life… and death…  I told her “I’m going in… when I get him out we can bury him.  He won’t swim again cause he’s dead. He’s not moving.”

I guess sometimes miracles do happen. Life prevails over death. People (and sometimes fish) find themselves in frustrating situations which seem like certain death sentences… but they don’t always have to be. Sometimes we keep swimming.

All I can say is chart another success… ummm…  go ahead and make that two…



Eggos, Nightmares, Pee Spots & Kinky Clothes

I’m not sure if it’s the sleepless nights or mundane routine of the days that has left me uninspired over the course of the past week or so. Instead of sitting down to the computer I’ve been stepping up to the treadmill in a desperate attempt to “escape” the insanity while shedding those extra 11 pounds I’ve accumulated over the course of the last 2 months. One too many "extra" Eggo’s…..

I suppose that is one of the perks of being a stay at home Mom (the extra Eggos that is).  I’ve actually debated filming my own commercial…

“Hey I’m Courtney I like my Eggo’s with cinnamon and sugar… I should probably not eat 4 or 5 each morning in front of my diabetic toddler but hey… they’re so good I just can’t stop!”

Not sure my mad film making skills would bring in the extra dollars needed around here… but hey I’m willing to give it a shot. 

So speaking of sugar and shots (cue rim tap on the drum)

Saul's been getting quite a few lately (shot's that is).  Day’s have been rough- nights rougher… I thought we’d be over the roller coaster of up’s and down’s… thought things would be calmed down and evened out… but… instead life goes and throws curve balls at me like… teething… and the common cold… both of which have sent Saul’s body into a ridiculous mess of soaring highs and nose-diving lows. Which in turn sends me into a spiraling depression because “when will this ever end?” and then I realize “oh… wait… it won’t, until he’s like… umm… 25… okay who am I kidding… it will never end cause I’m going to worry about this for the rest of my life” and then I get all self conscious like this is all I ever talk about with people and blog about and start thinking to myself “Okay… people get it. Your kid is diabetic. Wah.  So you’re dealing with some crap right now… get over it and tell some funny stories to make people laugh.”

 Except that I don’t have any funny stories... and no one wants to hear stories like this....

I thought about taking pictures of Solly’s pee spots… that might grant a chuckle or two… but I fear I’d run off even more folks from my house and since becoming a recluse that the last thing I need to do.

(See... this is my new look... the "recluse" haven't you seen everyone "pinning" it on their boards?

So back to Saul peeing... Saul pees so much (an effect of the highs) I’ve debated the idea of plastic clothes. Note to readers: DO NOT google clear plastic clothes… seriously. I’m warning you…. Don’t do it… and if you do… those are defiantly NOT the kinda pant’s I’m talking about. I’ll probably have nightmares over some of the images I witnessed.

And speaking of nightmares (wait for it… wait for it… okay no rim tap this time)

Saul has been having freakish night terrors- like demon possessed- bite my ear off- arms flailing-hysterical thrashing night terrors. They think his high numbers at night are the culprit (well that and maybe one too many) nightly episodes of “Little Einstein’s.”  Hey.... if the Eggo commercials don’t pan out…. I could always turn to the nightmare/thriller movie biz.



Retraction.

Retraction… or the post in which I declare my insanity, inability to write a coherent grammatically correct sentence…. and admit my incompetence in 70s disco music.

I woke up Saturday morning and while enjoying my cup of coffee over an all time favorite episode of Dinosaur Train, Sebulsky looks at me and says “Gloria Gainer.” I’m all “Huh?” “What?” and “Who’s that?” when I suddenly realized… “Crap! Wrong reference! Wrong reference!!!” I would have retracted, made an apology… admitted my stupidity…. but the day kinda, sorta ended up being crazy and at the moment I can’t even remember why…  but I know it included some ridiculously high BG readings, an emergency phone call to the UK’s Ped’s Endo on call, and treating a number of lows.

So… this post will serve as my official apology. Hey- I never claimed to be a professional... lol.  I just used LOL this clearly indicates my amateur status.

So on the “D” front… we’ve been riding the roller coaster of highs and lows. There has been progress (I managed to change out an insertion set yesterday (the ole blood in the tubing again) all by myself… even “kicked it up a notch” just for the heck of it and gave his stomach a try. There have also been digressions.  Sunday I stupidly forgot to bolus a snack before dinner which helped contribute to already existing high levels… and lead to a large ketone reading and mini DKA scare.

Despite a few setbacks and what seems to be an enormous mountain of learning…  I gotta admit… to everyone who say’s “it get’s easier”…… you’re right. “It gets easier.” With patience and practice anything is possible…. I suppose.

While Sebulsky and I continue to master our pump skills…. we’ve added to the fun by bringing Mom on board to train her.  

EH has taken up a random interest in yoga.

Mabel (some of you may remember her most recent escape which led to a rescue at the local animal shelter) and Daisy (god love her) are enjoying freedom in our newly fenced yard.

And Broni…. The only sane one in this house is constantly looking for an escape from the madness.

I promise pics will come soon… well… maybe.

Surviving.

For the past few days I’ve had this image in my head of miniature people all huddled around me on a stage shouting “POST! POST! POST! POST!” In reality I know there may be 2 or 3 people curious about this blog and interested in what’s been going on with Solly. But hey… I’ll keep that image going for just awhile longer. Haha.

The basics - as I’m sure you’ve gathered from FB-  is that Saul is now officially on insulin pump therapy as of last Thursday. I’ve given one insulin injection (yesterday) to correct and I must say that I don’t miss that old fun AT. ALL.  

Because no Grimes birthday  (or holiday for that matter) is ever complete without  drama I ended up getting my fair share late last night… which is typically how it works for us… you know… the weekend sickness phenomenon… the accident/disaster  prone holiday’s… luckily- thanks to Jennifer and a UK ped’s Dr. on call (sorry dude for getting you out of your warm, snuggly bed at 2:00 a.m. to talk me through a pumping crisis… do know… it was much appreciated)…. we all survived the catastrophe and was even spared a trip to the ER.

 I think if you’d ask Jeff he’d say he’s still not sold on the pump (especially after last night). We’ve had to work through a number of “kinks” in the past 5-6 days and it has most def. proven to be a learning curve…. on top of managing a new regiment with a toddler.  Despite the literal “highs” and “lows” I am still holding firm that pump therapy is the absolute best treatment for Saul…. even if it is mentally, physically and (emotionally) difficult on us at the moment.

I am learning (thanks to Jennifer our nurse and Ashley my FB diabetic counselor) that I will never get constant “perfect” BG numbers…. I think this is difficult for me because I feel like I’m in constant battle to achieve this… and because I’m competitive. and because I don’t handle defeat gracefully… (especially when it comes to losing to a stupid- broke-down -dead- beat pancreas.        ....… and because really… what I think in my head- is that I’m jeopardizing Saul’s overall, long- term health every time I see a number over 250 or below 70. Which in turn makes me even more crazy competitive and then I start taking it all personal- spinning into a cycle of madness that I won’t even get into in this post for fear someone might have me committed. (After reading those sentences someone SHOULD committ me for GRAMMAR FRAUD... but I'm tired... so look over it all. LOL) I seriously fell asleep last night to thoughts of me dodging punches from a  lima bean like organ… his ugly face smiling at me…  too lazy to do his job… but not to lazy to take a few swings at me every now and then.  I think I might have said out loud something along the lines of “Oh I’ll get you… you ugly thing… you better get that no good ugly face away from me” at which point Sebulsky shook me and said… you can always sleep on the couch.

When you’re the parent of a child with a chronic illness you live with a certain amount of guilt- there’s nothing anyone can say to you that makes it any better and on some level you know people are right when they tell you “it’s not your fault” but it doesn’t matter because you will always spend the rest of your life wondering “if” “why” “how.”

Compound this existing guilt with the guilt you feel when you make an incredibly stupid medical mistake and put your already at risk toddlers life in a “crisis” situation…  and that’s how I ended my 35^th birthday. During a nightly pre-bath check of Saul’s tubing I noticed blood. We immediately changed the set. Because set changes are extremely stressful- I’ll let you imagine on your own what it’s like with an 18 month old…  to say “we’re stressed” is an understatement. Even though Sebulsky and I do it together (because it’s a two person job and because we rely on each other’s moral support) we somehow managed…. WITH 2 sets of directions in front of us… to mess up royally last night by skipping a step in the process.  Our mistake resulted in us “overdosing” Saul on insulin at 9 pm last night. I can tell you…. our timing is always impeccable. We spent the next 5. Yes. 5 hours. 5 HOURS!…. checking his BG every 20 min and treating lows… finally at 2:10a.m I called the emergency line and requested the Dr. on call who was like… “umm… so you suspended the pump right?”  and I was all “what? Crap? AHHH? Why didn’t I suspend the pump? Why didn’t I suspend the pump? I knew to suspend the pump? I’m really sorry!” “Why didn’t I suspend the pump?” “It’s just that… (insert the possibility of a little crying here) It’s just… I’m really stressed… I’m really tired…. It’s like 2 am” “I’m so embarrassed” “Why didn’t I suspend the pump?” At which point the Dr said…. “So you’re suspending the pump now.. . as we speak, right?” And I’m all “No… I need to suspend the pump!!!” “I should have suspended the pump!!!”

(Okay so I think that’s how the conversation went but because I was delirious… and Jeff was holding down a screaming Saul and Little Einstein’s was blaring in the background and I’m sure Mabel was howling in the other room…. It all just kinda blends together).

But….

We survived.

I suspended the pump.

His numbers quickly went up.

I slept through 2 i-phone alarms set to wake me up to do follow up BG checks.

I did not bolus a BG of 332 at 5:22 a.m.

I overslept and woke up to Saul’s BG at 489… which I do believe has been the highest to date (minus our hospital stay).

And still….  

We survived.

I called and left UK a message explaining the situation.

I started texting Jennifer.

She drove an hour out of her way to come check on us… I’m pretty sure she did it more for me than for Saul … at any rate she adjusted some doses. She relieved my anxieties. She made me feel “normal.” She reassured my confidence. She offered to drive to my house and watch the kids so that Jeff and I could actually get out of the house and have someone fully confident in pediatric pump therapy watch Saul… you know so we could “take a breather.”

As she was going out the front door I mentally let out a huge sigh of relief.

Because….. I know…..  we will survive.

It will get easier.

We have amazing support.

And also because just as we were saying goodbye… Saul leapt out of Jeff’s arms (as if on cue) and gave Jennifer a genuine hug of appreciation. He doesn’t talk but I’m pretty sure that hug meant… “Thanks… this is from my Mom.”

Umm... Take 3?

So. Yeah. Epic Fail today. Poor buddy has endured 3 insertion set changes. The first two I did... The last one I made Sebulsky do (which those of you who know him know that was probably the hardest thing he's ever had to do).

Notes to self.
Watch how you hold that sucker.
Only insert once.
Must choose poop-proof insertion set location. Remember this Grimes. Remember this Grimes.
Medical tape works wonders.
Rice Krispy treats & Little Einsteins are the bomb. Thank you key players.

I'll leave you with sweet pics.

We're up & running... make that "pumping"

Exhilaration + Sleep deprivation – Confidence X  Stress = Day 1

{insert longest sigh of my life.}

I won’t lie… the shift from insulin injections via syringe to pump therapy has been a challenge.  Aside from the initial insertion Saul has pretty much been oblivious- which was the exact opposite of how I thought he’d react. I imagined the first day being a constant battle with him ripping out the tubing, pushing buttons on the pump (like he does on my phone) and eventually discovering he could yank out the insertion set---but instead he did great and Sebulsky & I ended up being the ones stressed out over the new learning curve.

I was so excited and ready to get him on the pump. I thought I had mentally prepared for it all… until… well…  9 a.m. Thursday morning when I realized… oh crap… this is really happening. Don’t get me wrong… it’s gonna be good… great actually… but like most good things in life- it’s gonna take work .

Tuesday night I stayed up way too late searching this site.

I ended up buying this.  

Even though I wanted this… really I just wanted to buy it for Sebulsky- cause I knew he’d love it.

After researching and asking around I decided to also purchase an insulin pump harness for Saul. Most of what I’ve read online about toddlers on pumps have shown or mentioned active children or toddlers wearing  harnesses. So at 11:30 pm in an act of desperation I got on Amazon and bought this.

I’m embarrassed to say I paid quite a pretty penny to have it shipped overnight in time for Thursday morning and am STILL WAITING FOR IT’S ARRIVAL (still waiting as of 4 pm FRIDAY afternoon…sigh).

Which meant that I started stressing out Wednesday night around 8 pm when I realized… AHHHHHHHHHHHH!!!!!!!!!!!!!!! We’ve got nothing to put his pump in… AAHHHHHHHHHHHAAAAAAAAAAAAAH!!!!!!!!! WHAT ARE WE GOING TO DO!!!!!!!!!!!!!!!!!!!!!!! Does Walmart sell  toddler fanny packs? AHHHHHHHHHHHHHHHH!!!  ABORT mission! ABORT mission! POSTPONE! POSTPONE!

I woke up Thursday morning more stressed out about “pump containment” than the actual procedure of hooking him up to the pump.

Jennifer showed up around 8:45. We went through several hours of “training ” paper work and eventually ended with a culminating “test” of our knowledge and ability.  Looking back the whole thing was pretty funny and I’m sure Jennifer thinks I’m nuts because you seriously would have thought I was defending a dissertation… or taking the MCAT… or completing the Bar exam. Jeff was joking with me later and said… “Courtney the look on your face when she was going over his doses and doing calculations was “classic.” Needless to say I was mentally exhausted by 9:15.  

I “assisted” Jennifer with his initial insertion.  Sebulsky will be “assisting” me Sunday when we change out his site for the first time solo.

He survived (as did Jeff) this first go around.  Saul appeared to be more confused about why some strange lady and I were holding him on his stomach with his pants down- than he was about actually having a needle temporarily inserted and taped to his butt cheek.

In case anyone is curious- Saul is using the Sure T infusion set.

“The Sure-T infusion set is a steel needle infusion set with an additional adhesive pad to provide extra security against needle dislodging. The Sure-T infusion set is intended for insulin pump users who prefer using a very fine 29g needle to infuse their insulin rather than a cannula.” (Medtronic)

He looks ridiculously adorable.

 Like a teeny tiny little physician carrying a pager…. that’s way to big for him.

It’s hard for me not to take 500 pictures of him with his pump…. Cause I think it adds to the overall cute factor… and I know without a doubt the chicks will dig it.

The not having a pouch/harness/thing-a-ma-jig has not realllllllyyy been that big of a problem- yet. We’re sticking it in pockets or hooking it on the back of his pants or putting him in overalls until the over-priced ugly denim harness arrives… hopefully tomorrow?!?!?!

Sleeping has gone FANTASTICALLY (knock on wood… don’t jinx it Grimes… don’t jinx it). He’s taken two naps with the pump in his pocket and slept the entire night with the pump hooked to his back and did awesome. This was my overall biggest concern… I know… Sad. Right? But it takes a lot of trust when he’s by himself…

And speaking of trust…. I will be working very hard over the course of the next 3 months to build trust that someone else will be able to care for him, be able to operate his pump, problem solve, count carbs, treat his highs and lows…. It’s not going to be easy. It will be the hardest thing I’ve ever had to really face. I’m hoping I’ll be able to conquer my fears and anxieties and put my trust in someone else who will ultimately be solely responsible for his care. (Can you tell I’m having some real issues… If anyone would like to offer up private counseling I’m in).

Anyway…

Our first BG reading on the pump was a low we had to treat.

Our second and third and fourth and fifth BG readings were high… 323, 383, 380, 352… all of which we’ve had to treat.

Luckily… ketone tests have been negative and the lowest I’ve seen since leaving the hospital- a good sign!  

It’s stressful.

It’s exciting.

It gives me hope for better control of this crazy disease that somehow randomly targeted the sweetest boy I know. 

P.S.

And of course in the midst of it all… in typical Sebulsky/Grimes fashion our Heating/AC unit died… cause you know… we had to have something to take our minds off of Saul… since Harper’s not here demanding attention.