Kryptonite

You were “Super Robot Guy” again this evening (you have been for days). I guess the transformation occurred while Sis and I were at Gymnastics. You’re the only Super hero I know that stops mid-mission to give kisses. 

Tonight’s been rough. I guess it started once you shed your “Super Robot Guy” attire. If I had super powers I’d protect you from what just happened. I’d fight that stupid Lex- Luther- pancreas of yours and show him whose boss. He’s done nothing but plot your demise since he quit functioning over a year ago.

Everyone is hard to love sometimes… even super heroes. I had to remind myself of this tonight when the incident occurred… that it’s not really you… you’re not really in control… it’s the diabetes… and I’m sorry I couldn’t stop it from happening. I’m sorry your bloodsugars were so high that it made you sick. I’m sorry that during hyperglycemic episodes you are altered from a strong, kind-hearted hero to an angry, wrathful fit-throwing villain.

I know you won’t remember screaming. You will forget yelling at Daddy telling him to “just leave” “just go away.” I won’t make you feel bad for hitting and swatting me… for shouting “NO MOMMY… NO TOUCH…NO TOUCH ME… NO KISS ME… NO TOUCH ME” and shattering my heart into a million pieces because other than giving you insulin it’s my only means of comforting you. “

When you wake up in a few hours- you’ll ask if you can be “Super Robot Guy” and you know of course, I’ll say yes. You’ll run around the house pretending to be “super strong” and “super tough.” We will play the game we play every single day - “Super Robot Guy” saves “Super Mommy”and when we do, I’ll try not to think about what happened… how I couldn’t save you from getting sick tonight… how I can’t always shield you from the highs and lows that seem to hit you from all angles outta nowhere and for no reason.

I’ll tie my cape a little tighter tomorrow… and maybe for a few hours I’ll pretend to fight criminals instead of diabetes. 

I beg you... please read.

* Disclaimer- I am not a Dr. or a CDE... just a Type 1 mom with a Type 1 toddler.

When you have Type 1 you must constantly balance/manage/control your blood sugar levels. Your Endocrinologist gives you a "range" in which you must attempt to stay within. You (or someone) must take on this responsibility and perform the duties of a pancreas by controlling the amount of blood sugar in your body at all times. If you get out of range... blood sugars rise too high (hyperglycemia)- (consistently high blood sugars lead to long-term complications- damage to kidneys, eyes, heart, amputations) or if blood sugars drop too low (hypoglycemia) you will die.
 

Before I had a toddler with Type 1... and even in the hospital at diagnosis, I honestly thought... "ah... it's just diabetes." I know that so many of you out there think this as well... I'm ashamed to admit that I taught students (both sweet elementary babies and high school young adults) who were Type 1 and I never really gave much thought to how I would handle a hypoglycemic episode if it happened in class. I didn't think Type 1 was a big deal, because I didn’t know. Because I watched my Granddad live with Type 2 and thought that Type 1 and Type 2 were basically the same. Because I thought diabetes was about "sugar free foods" and "weight loss" about "finger sticks" and "insulin injections” not about having to save someone’s life in an emergency situation.


Saul has now had 3 “serious” hypoglycemic episodes. Because of the severity of the circumstances I feel the need to advocate and educate about hypoglycemia and what you do if you find yourself having to assist in a hypoglycemic episode.  


I can only speak for Saul- and how they have occurred thus far.


All of Saul’s “serious” hypos have taken place during “sleep.” 1- during his nap (you may recall that post- our first ambulance experience) and 2- during the wee hours of the morning (this post).

 
While Saul does wear a Continuous Glucose Monitor (a device with a cannula that stays in his skin and measures the amount of blood sugar in the interstitial fluid) the technology is not 100% accurate. The CGM is linked to his Insulin Pump (a device that is inserted – it has a steel needle which stays in place and provides both “long lasting insulin” (basal) as well as the insulin used to cover the carbohydrates he eats (bolus). The insulin pump must be operated by a human. Both the CGM and pump are just technological tools to help ease the difficulty in keeping a Type 1 “in range.” While I am appreciative and thankful for today’s medical advances and our family’s ability to acquire them…they are not fail proof… and they will not prevent death.

 
Managing Saul’s Type 1 is extremely difficult because of his age. His eating patterns, communication, growth, development, etc, etc, etc, only complicate controlling his blood sugar levels- therefore he is more prone to instability and at a greater risk for experiencing both hyper and hypoglycemia.

 
I will save hyperglycemia for a later post and focus efforts on hypos for this discussion.

 
There are numerous sites with hypoglycemic information and education out there. Here are two as starting points. 


Hypoglycemia Information
 
Hypoglycemia Information


The lowest hypo we have recorded for Saul has been a BG of 35.  Ironically he appeared “hypo-unaware” at the time. He was talking and playing and “acting” like normal Saul.  When he suddenly “fell down” I thought to myself “hmm… strange” and just happened to check him. His CGM read 110 at the time. We attempt to keep Saul between 100-200 (though he often runs higher). We “treat” at 70. So seeing a 110 on the MySentry (a large screen that shows CGM reading at all time) would “typically” be no cause for alarm.

 
During Saul’s severe hypo episodes (the 3 really bad ones) he exhibited the following symptoms.

• Heart palpitations/fast/pounding heart rate
• Sweating
• Acting aggressive (hitting, swatting)
• Convulsing
• Shaking/trembling
• Uncontrolled shouting/screaming  (it’s hard to describe this… but he did it both in terror “Stop” “Stop” and once it kind of went parallel with the aggression… or at least that’s how it seemed at the time)
• Dilated pupils
• Mental confusion/disoriented
• Seizures

 
Saul has never lost consciousness or gone into a coma.

 
We have not used glucagon (yet). Glucagon is a hormone secreted by the pancreas that raises blood glucose levels. Because a Type 1’s pancreas can no longer produce or secrete glucagon an injectable form is used in cases of severe hypoglycemia (when someone is unconscious). Glucagon should be carried at all times by Type 1 individuals. Saul’s glucagon is in a red case and must be mixed before injecting. We have been instructed by our Ped Endo to use glucagon if Saul has another terrible episode.

 
If you are ever with him (or any other Type 1) and you see hypoglycemic signs (again… Saul’s often hypo-unaware at this point so he cannot “tell you” how he feels you must watch for the symptoms and check his BG level)

 
You should follow these steps.

1.      Check BG with glucose meter.

2.      If 70 or below - treat the low with 15 grams of a fast acting carb (juice, skittles, cake gel, glucose gel or even table sugar if that’s all you’ve got).

3.      Wait 15 min and re-check BG level if still below 70, treat with another 15 carbs and re-check in 15 min.  

4.      If he is unable to swallow you can rub cake gel/glucose gel in his mouth

5.      If he’s unconscious you must administer glucagon.

Really- Saul’s hypos have been so bad we should have used glucagon… he choked and aspirated on juice during 2 of his hypos- which adds danger to an already dangerous situation. Also… skittles would be a really bad choice for treating a severe hypo.

 

We have been lucky so far to be able to get Saul out of his hypos fairly quickly. Obviously, preventing them is the ultimate goal- however, we’ve learned first- hand that even under the closest watch hypo’s can occur.

 

 I saw this on FB yesterday:

 "Type 1 diabetes is a continuous balancing act. Imagine trying to manually control your temperature or heart rate all day, every day. It must respond and change throughout the day, but not too high or too low or you die. That's exactly what people with Type 1 are doing with their blood sugar"

 

Type 1 is truly an on-going balancing act. It’s easy to forget that sometimes folks walking the tightrope might need a hand, or a net.

Oh 2013... I'm not going down without a fight.

As many of you know, 2012 was somewhat of a "difficult" year for the Grimes-Sebulsky family.

 

Not just my immediate family- but my extended family also faced a number of medical difficulties -including my Aunt's diagnosis and battle with breast cancer.

 

I had have high hopes for 2013... I'm working on my attitude and showing more gratitude. I'm trying to focus on positives and give back to all those who have given to me- because if 2012 taught me anything... it's that I was blessed to have received love, support, clothes, time, food, money, help and prayers. 2013 will be my year of reciprocation.

 

And... though the past two mornings have been extremely difficult for our family. I refuse to let diabetes take total control of our lives in 2013.

 

Saul has experienced two- severe hypoglycemic seizure-like episodes two mornings in a row.

 

I can only pray that none of my family or close friends ever witness what takes place- their hearts would break into a million pieces to see him suffering and so out of control. I feel for all the mothers and fathers of epileptic children who endure way more than what we have witnessed.

 

The first episode took place New Year’s Day. Jeff was asleep in our bedroom- EH and I asleep in the guest bedroom- Saul had gone to sleep in his bed. Jeff was the one who actually woke me up- yelling "Get in here! Come Quick!" Apparently he had heard Saul cry out... he looked in his bed, looked to see if he was with me, and was running through the house ... he found Saul lying face-down in the playroom- totally out of it.

 

Jeff and I both think lil Buddy was trying to treat his low by getting to his emergency juice on the back porch... but didn't make it. We didn’t use glucagon on him- got him up and able to drink juice- an hour later he was back to dino- dancing, car zooming and driving EH crazy.

 

This morning- (for me) - has been the worst episode to date. Jeff and I both rushed in to his bedroom to find him (either coming out of a little seizure like episode or getting ready to go into one). He was shaking uncontrollably, pupils fully dilated- he was out of it- but breathing, I held him while Jeff poured the juice down. Again- we didn't use glucagon... after 2 juices he stopped shaking and stopped crying out. After 1/4 cup of lucky charm marshmallows he was talking and laughing.

 

Because Jeff was here with me and we were dealing with it together... I think I was more upset and allowed myself to get more worked up and scared. I know this is ridiculous... but in the moment, when he has little to- no control over his body, and he sucks down a 15 carb juice in 15 seconds... I want to see immediate action... and well... it didn't happen this morning... and I just want control. I want to control him and control his body and his brain and well... I guess I should be more focused on my own actions and behaviors during a crisis situation.

 

I'm so curious how others handle seeing/witnessing/assisting hypo episodes. For the 3 (bad ones) he's had so far... I've held him and just repeated over and over "it's okay. it's okay. it's okay. it's okay."

The worst, and what sticks with me like some PTS experience is his crying/shouting/screaming out randomly "I'm SCARED!" and "STOP!" "STOP!" He's so terrified in the moment and it’s like he knows what’s happening, but doesn’t understand it- or how to stop it (not that he can) and it's so awful to watch him be frightened and not be able to help him.

 

But. You know what... He came out of it. He's okay. Daddy went to work. EH woke up. We've played dinos and cars and Let's go Fishin, and Hungry Hungry Hippos. We've watched Daniel Tiger and My Little Pony (yeah... I know... it's sad... he loves it). We've chased Daisy around the house, we've made 5 million messes, we've had a great day- despite diabetes trying to ruin it for us. We move on... We have fun. We live. That's how it's gonna be 2013... so get used to it.

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. 

Just one of the "D's"

So... I can't believe it's taken nearly 8 months for me to do this... or that it took Sebulsky 3 attempts to insert the CGM.

Either way... I've got two sites going... I don't have a pump with saline - just tegaderm covering the site where the needle is inserted. I'm only "wearing" the inserted cannula for the CGM site and have tegaderm covering it.

I won't lie... even with lidocaine (numbing cream) prior... The CGM insertion did not feel great. I wouldn't say it was painful... But I certainly felt it (and felt it, and felt it.... Lol.... Sorry Sebulsky 3rd times a charm). It remains uncomfortable- again... I wouldn't say it "hurts" but is def. present and annoying. After just 3 hours of wearing and an hour of cardio the site has started to itch and I find myself wanting to scratch at it. The pump site insertion felt like a like "prick" basically like a finger stick in the stomach. It does't hurt... its more psychological than anything... just the thought of wearing a tiny steel needle in your belly all the time is kinda weird. I was cautious at first with bending and stretching... I wonder if a cannula has a little more give and feels a little better? Maybe I'll ask Medtronic to send me a few different insertion sets to sample. Lol.

I wish we'd video'd Saul's reaction this morning. I asked him if I could wear his pump and he stared at me with a look of disdain and said "nooooooooooooo" shaking his tiny little head. Then he yelled "pump car mine." Lol. I guess I should be happy about this. That boy loves his "pump car!"

Stay tuned for more updates!

Blue Skittles

Sometimes I forget the fear of that horrifying seziure, ignore the potential choking hazard, refuse to think about the dental damage and find myself entertained by treating the second low of the night at 2:30 a.m.

Well on second thought....

So I woke up this morning refreshed, rejuvenated and ready to roll. Despite the recent inconsistency in blood sugar levels, inability to make contact with UK for pump adjustments AND coming to the realization last night at 10:30 pm THAT $&$*@^& we only have 2 reservoirs left?!?... 2 left?!?...what do we do?!? what do we do?!? what do we do?!? only 2 left!?!?,................Saul slept like a champ and (according to MySentry and 3 BG checks) kept constant, stable "in-range" numbers throughout the entire night.

I celebrated the occasion with an updated FB status.

On top of successful numbers and sleep.... a frantic text to Jennifer (our wonderful-faithful Medtronic nurse) late last night was returned with the response "Fed-Ex'ing you first thing tomorrow morning." This definitely helped ease my mind and allowed me to sleep more soundly. 

I was actually thinking about buying a lottery ticket after phoning Medtronic this morning. I called in regards to Saul's delayed shipment of medical supplies.  When they told me "don't worry... we're shipping you some emergency supplies till your insurance authorizes our reques I allowed myself to let out another huge sigh of relief.

In between calls and texts Saul kept fussing and twice brought me packs of his emergency skittles. Glancing at the MySentry screen and seeing a SG reading of 141 AND being told to wait 2 hours after eating before doing a BG check- I rationalized his behavior as "sneaky" and "just wanting a little candy."

So we ran. We played. We had fun. At 10 I declared time for a morning snack. I sit down to check him and he's 36. 36!!!!! To date that’s the lowest number I've seen on a meter reading. *sigh* forget that lotto ticket. He presented no symptoms. His request for skittles had been an hour before reading. He apparently "felt" himself going low- I ignored his request the result is he plummeted.

A year from now - I pray - we never see numbers so low- because his DAD will catch them as I hadn't... and for the record his CGM was reading 115 (two arrows down) at the time of his BG check.

It's been the second time here recently I've misread his attempt to communicate with me.Last night after putting him to bed we listened to him cry for at least half an hour. His pre-bed BG check was spot on. MySentry reading 150. I peeked in once.We told ourselves he was mad because we hadn't given in to him wanting to take a drink to bed.

I finally caved. Walked in to find he had pulled out his insertion set (which had just been changed) and was bleeding... the tiny steel needle jabbing him repeatedly on his thigh. That poor boy had laid there in the dark crying the whole time. I said Saul... "why didn't you call for Mommy!" "Why didn't you yell pump!" (that’s what he usually yells when his pump falls out or he hears a CGM alert. He just kept saying "ouchie" "ouchie." It. broke. my. heart. However watching Harper jump into "I'll save you nurse status" late at night is quite amusing....anything to avoid sleep- although last night I think she really was concerned. 

We continue to battle highs and lows and attempt to curb Saul's desire to "graze" I seriously considered getting locks on our accordion folding doors yesterday to prevent him for getting into the pantry. I am trying to get to a point where there are no visible signs of food. Lord help us when he's able to actually open the fridge door.

Yesterday though sad- I had to laugh - when he came to me wanting something to eat and I said... lets go play cars...the look on his face was priceless... kinda a mix between "what the?"and "woman you gotta be kidding me.... get me a snack already."

The irony is... as I try harder and harder to cook low-carb healthy meals...I find myself desperately attempting to shove as many carbs as possible down my throat... when the kids aren't looking. I think I might have actually experienced some carb withdrawal symptoms a few days ago. Which speaking of I'm gonna go ahead and end this now so I can cram down a bag of sugar free cookies while the boys are napping.

Hey... whatever it takes to survive right?

I'll leave you with some adorable pics of the sweetest boy I know (I took these pics 5 min before his 36 BG reading) as you can see... he is not presenting hypoglycemic symptoms at the time... especially for a BG reading of 36.  This my friends is not a good sign and why I will soon be asking for your help in acquiring a DAD.

ahh.... the best of times, the worst of times....

I flat out said... I'm not posting again till I have something not-depressing, not-tear jerking, not-disheartening, not completely overwhelming to talk about. You might have noticed... it's been several days.

And though days are sometimes tough and nights have turned me us into sleep deprived zombies (who too often turn on each other in an effort to... please... just...let... ME... get... the... sleep... tonight....) we've also spent the in-between times... the in-okay-range- times making contacts across the U.S. with some incredible folks and some amazing families who are helping to normalize these "difficult times" and making me feel far less isolated and alone. We've also been showered with cards and dinosaurs (Thanks Aunt Vicky and Uncle Bob) special visits, the coolest T-Rex washcloth (Thanks Aunt Christy.... it's currently the ONLY way of getting Saul into the tub) an hour of respite care (Thank you Willians... this truly was priceless), and lots and lots of texts, messages, emails and phone calls. I never. ever. ever. take any of these gifts for granted. The comments, the kind words, the prayers... friends from back home who I've not seen in years who've reached out... I sometimes become so overwhelmed and entangled in love that I close my eyes and attempt to take it all in- try to remember- savor- relish the outpouring of kindness and generosity.

Saul's BG's have been anything but stable since the seizure episode and reducing his insulin intake. Because we've got him running high and are attempting to find patterns in the data it's made for some interesting "hulk-out" moments... the most recent occuring yesterday at the Palomar Panera in Lex. My apologies to all other patrons- while we were quaranteened in the corner by the door- away from everyone else- I could understand your frustration with the random objects sporadically thrown, the occasional roars and growls, and that one outburst of laughter (sometimes laughter is the best medicine).

Luckily we were able to attend our first American Diabetes Association "Family Day"which was held at the Life Adventure Center in Versailles. The kids had a great time running around and making nature crafts and I enjoyed meeting people and being in the company of other T1 Moms and Dads. I cracked up as I went through line getting food and was given the carb count on the cookies.... It was wonderful getting to see Jennifer (our Medtronic nurse) and meet a young lady from Win-city with T1 who works at our local indoor pool. I had so many "moments" yesterday... from over hearing one mother (of a child who appeared to be 6-7) talk to a vendor about insulin pumps "It's just.... I'm the only person who watches him and how will I teach someone else to do it? I mean... my mother occasionally watches him but when she hasn't done it for awhile... well... she often forgets and I have to teach her all over again... I'm just worried about the pump.... it's so much to learn and then teach someone else." I lowered my head and quietly nodded in agreement... I know exactly what she's talking about. The little 6 year old boy (who happened to be the next youngest after Saul) got too hot and went too low while participating in the "Nature Craft" at the garden... watching him down juice boxes and granola bars while his mother held him in her arms gently running her fingers through his hair gave me chills. There was a Dad who came over to "talk pumps" while I was bolusing Saul... I chuckle now as I look back on our discussion and liken it to two people talking cars "well the Ford actually..." "yeah but a Chevy can...."

Saul of course was a huge hit at Family Day- I mean... it's hard not to fall in love with a little dude running around in overalls pump dangling out of his back pocket. They took lots of pictures of him- and even videoed "us" with our "diabetes story." I'll be sure to link you all to any ADA pics and videos... lol... I sent Mom a text saying something like "Saul is making his debut appearnce."

So many families thought Harper was our T1 child... when I'd say... "No he is" and point to Saul they ALL on cue would tilt their head and let out a huge sigh... then say "I'm so sorry.... I can't imagine what you're going through."

I'd like to think that the outpouring of prayers is what allowed us all to have the best night of sleep we've had in days.... so great that both Jeff and I slept through a number of alarms set to check BG's. Luckily MySentry had him running in the high 200s all night (a far cry from the 300 and 400 hundreds as of late).

I've got lots more to tell you... talk about some upcoming fundraisers for Saul's DAD (diabetic alert dog)... tell you some hilarious Harper stories... but right now I've gotta get off here and figure out what to do about the fact that
1. I lost Saul's lancing device yesterday at the garden.
2. I gave away Saul's other lancing device (you know... his back up).
I'm currently counting out exactly how many lancets we have with the free-bee and guesstimate how long thats gonna last us today.

I'll leave you with a link to Jeff's photos. Check them out if you haven't seen them on FB already... theres some good ones!

Saul making friends and making folks smile

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.

I got a "high" from a low.

So last night started out pretty rough. Because I ridiculously feel the need to share my entire life on FB- I'm sure you've already heard all about my little "skillet incident." Needless to say- I will not be putting skillets in the oven for quite some time- no matter what a recipe calls for. Almost 15 hours later, all three fingers are "back to normal." What upset me the most (other than realizing my sheer stupidity in trying to pick up a hot skillet handle) was the fact that all the drama left me no time or energy to make this new "Cauliflower Mac & Cheese" recipe I'd been dying to try all week.

I pretty much was "done" by 6:15 pm.... forcing the family into pjs and mandating a "movie night." Instead, Sebulsky and I were treated to the absolute most hilarious hour and a half of our lives. Harper decided to entertain us with a "dance party performance" which was interrupted by Saul who came busting through doing what he called the "dinosaur dance" a combination of spinning in circles while roaring like a T-Rex and pretending to claw the air.

It was sometime between the 3rd degree burns and dance party that Saul recognized-  then-  treated himself for a low.

Somehow I didn't quite realize the monumental-ness of the event at the time and kinda passed it off as "aww so cute."

But. This. My. Friends. is HUGE. Like... really HUGE.

We were all sitting on the couch when Saul started whining. He kept it up- but because the CGM wasn't beeping we chocked his whininess up to wanting to watch Cars or play on the ipad and ignored him. We didn't think much when he hopped off the couch and ran into the other room. He came back a few minutes later chugging one of his "emergency juices" which he had gotten down by himself off the back shelf. He managed to pull the straw off the back of the juice box - push it in the hole and drink the entire contents while in route to the living room. He announced to us all "low" "low" "low." We immediately grabbed the meter and checked him. BG 41.

I was so elated with him that I kinda just forgot about that scary 41. I was happy that he recognized the feeling of being low - that he attempted to communicate it through whining (which we failed to realize) - and most importantly that he knew what to do - and did it. In essence- he administered his own "medication." At 22 months he treated his first low all by himself.

We praised him. We kissed him. We hugged him. We encouraged him. It was our first "big" step to self-advocating... an essential life skill for all kids- but especially for Saul.

A juice box, half a PB sandwich and a quarter of a banana later he was back to dinosaur dancing.

Small steps my friends... small steps.

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.

2.5 years and still counting

15 months + 11 months + 4 months = 30 months = 2 and a ½ years (and counting….)

My friend Stephany wrote a comment on FB yesterday “thanks for the pump.”

I read it twice before I figured out she wasn’t talking “insulin.”

I laughed and thought to myself… my life has been nothing but pumps since the day Harper entered this world.

I always knew I would breastfeed. All the women in my life did it… women I worked with and worked for... I always wanted to do it… for me… for the kids…

And, I also knew, that as a working Mom, pumping would become part of my daily routine.

-          The daily 4 am alarm. Locking myself in the wiring closet at work. Hiding in bathroom stalls at conferences. Pumping and dumping. The special car adaptor that could possibly have been the greatest purchase of my life. Having to get up and leave in the middle of dinners-movies-conversations. The never-ever-ever-ending “EerrKk”  “EerrKk” “EerrKk” “EerrKk.”

I’ve learned a lot of lessons about life, myself, sacrifice, heartache, and joy in the 2 and ½ years I’ve dealt with pumps –breast and now insulin.

Possibly… the most poignant is that both are life-saving devices… which assist/ed in accuracy, efficiency and delivery…  yet… they are still just devices.

It takes commitment, time, sacrifice and experience… It takes an operator. A button-pusher. A controller. A human. It takes someone who is willing to step up to the plate and do the job… day in… and day out... even when you don't really want too...  

It takes love.

I include a disclosure.

I would never say breast is better than bottle or injections are better than pumps.  I know… because I’ve experienced it all. We each face different obstacles and challenges and in the end we all must find peace and happiness in the choices we make – what works for us – what’s best for us. All of us-mothers (and fathers) out there who love our children more than ourselves sacrifice in some way in the name of love.

$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.

1/2 a year looks 1/2 full

6 things I’ve learned in 6 months.

1.       It does get easier.

2.       If carb counting was an Olympic sport… I’m pretty sure I’d get a medal.

3.       Diabetes is totally random, makes no sense and never will… so hate the “Big D” and move on with life.

4.       The CGM is the bane of my existence.

5.       Managing diabetes may actually be easier than potty-training.

6.       Saul’s got the best friends and family in the whole world.

Traveling D Style: Our first "BIG" Trip since diagnosis

The planning prelude was, for me, the most difficult part of the process. Because this was our my first big trip with Saul away from home... and Dr.’s - I spent a great deal of time preparing for every possible glitch and malfunction.

Loaded. I {heart} the mini-van for many reasons. I have enough space to live out of the back of the sucka for a good month or two. BTW- 4 huggies boxes used as "carriers" during this trip. On my to do list is covering them with paper or fabric... recycling at its finest. lol.

Those of you who know me well- know I have never been “a planner.” Organization, efficiency and preparedness really never entered my vocabulary until Saul’s diagnosis (ironic that I would end up in a profession known for these coveted skills…lol).

I started by making lists which included most importantly *diabetic medical supplies and insulin as well emergency 15-carb items for treating lows (Elmo juices, skittles and of course Glucagon), low-carb snacks that could take heat and travel well (bags upon bags of pork rinds, peanuts, peanut butter, gold-fish) and of course clothing, swimming gear, car-ride toy & book bins, along with all the other random items we might need... bikes... helmets... snowsuits...  

These were "emergency" (not necessarily diabetic emergency... lol) snacks that rode up front with me.

I made sure to check-and double check all prescriptions to make sure we had enough to last and wouldn’t run out over the course of a possible 10-15 day stay.

I also planned for the absolute worst which would be a pump malfunction in which case we would have to go back to insulin injections. I made sure we took enough humalog AND lantus (long-lasting insulin) which he ONLY uses if injecting… just in case.

All of Saul's diabetic "stuff"

Because insulin must be refrigerated… especially during heat waves and long distances in the car I used my old Medela breast milk storage cooler which worked wonders. Luckily our mini-van has a built in cooler that’s come in handy quite a few times when traveling with refrigerated medications.

Good ole Medela breastmilk cooler bag for insulin. Nothing like a repurposed item.

*I also checked to see what hospitals would be covered by our insurance if, in case we did have an emergency that would warrant their use.  Knowing our luck and the Grimes curse… I knew it would come in handy… which in fact –unfortunately- it did.

Poor Litte Buddy leaving Urgent Care

I physically carry the kids insurance and social security cards with me at all times (I also have them in picture form on my I-phone) in case I would ever need them.

Due to all the frustrations we’ve had using the CGM I decided Saul would NOT wear it during the trip (though I packed it and all the supplies – including the MySentry) just in case I changed my mind or his BG levels started trending.

An hour before we left for WV I got an email from UK with the biggest changes to date- which worried me a little since Dr. Irene changed his basal rates, insulin to carb ratios AND target range… any little tweak or minor adjustment can really “shake things up” so the idea of that possibility - coupled with a 4.5 hour drive by myself - AND during a crazy heat wave of 100 degree weather – was a bit frightening.

My parents farm is (what I consider to be) “a pretty remote” locale – a fur piece - from major groceries, hospitals and pharmacies... so making sure we were fully prepared (especially with the number of power outages experienced in that area) was crucial.

Traveling with young ones (whether or not they have medical issues) can be difficult. Schedules are wacky, sleeping arrangements are different, car rides are looooooonnnng and often boring (even when you’re equipped with DVD’s, CD’s, I-Pads, toys and books) so of course I had my fair share of all that. 

I tried to stick to our routine eating schedule as much as possible –knowing that verging from it could really throw off Saul’s numbers. I made sure to pack enough food with me at all times he’d have something substantial to tide him over.

Speaking of food... this pic was from our special Bob Evans dinner with Grandma. Saul ate pancakes, eggs, sausage AND birthday cake and still had great numbers.... and that was with me "guessing" carbs.

Overall, the trip was a major success and allowed me to “overcome” the fear of traveling solo –long distance with him.

Sure- we ended up at the local Urgent Care with burns to all 10 finger pads from a freakishly hot plastic slide at the playground..............

The pictures just don't do it justice. They looked awful... and he was pitiful... and it meant we had to do all BG checks on the toes... which he HATES.

Sure he had a few readings in the 400-500s from being dehydrated from the heat (all of the 15 min he spent in it)...........

Saul (like most everyone else in the world) does NOT enjoy a heat index of 108

And sure…. We had our share of the dreaded lows… with one hypo episode (nothing a few packs of skittles didn’t cure)................

Skittles... my new best friend.

Overall, however, despite a few minor "obstacles" I’d give our trip a 10 out of 10 rating.... and I think Saul would agree.

If you'd like to see lots and lots of pictures from our trip - check out Sebulsky's flickr site and please ignore the TERRIBLE pictures of me at the Clay Center and the fact that I'm bascially wearing the same thing every day. lol.