Ch-ch-ch-ch-Changes

They're not always bad.

 

(changes)

 

They're difficult.

 

They're necessary.

 

 

They're inevitable.

 

(sometimes)

 

 

I could attempt to explain what led us to enduring a 7.5 hour apt at Cincinnati Children’s Hospital last Friday (one that involved a series of thorough hour long + appointments with a Social Worker, Pediatric Endocrinologist, Nurse/Diabetes Educator and Dietician) oh… and agreeing that the 1.5 hour or so drive both ways… was “totally no big deal” ............... but instead… I’ll just say… my devastation over our Ped Endo at UK leaving coupled with this brought on the change.

 

 

And it was great.

And it was worth it.

 

 

Having been fully informed about the length of our initial apt, Jeff and I decided to drive up on Thursday so we could spend the day with Saul at the Aquarium and hang out in Cincinnati. We thought the alone time with Saul might be nice.. and we were right. We had a wonderful "mini-vacation." Because it’s possibly the only one I’ll get this Summer – I took full advantage of all hotel amenities and was living it up at Embassy Suites.

Cincinnati Children’s is amazing. I will try not to compare our experiences with UK Children’s (mainly because I have friends and contacts at UK) but it’s hard not too… The Pediatric Endocrinology Dept/Clinic at Cin is so much bigger and better staffed (granted… bigger is NOT always better) so quality of care will be determined as we progress through this journey. The striking difference however, is the approach to treatment. There is something to be said about the unique (and it is, believe me, “different” than what we’ve been accustomed too) method that is used.

 

From the beginning of the process I was told the Clinic institutes a 4 team approach. You are followed by a Pediatric Endocrinologist (there are a number of them-  and the Clinic encourages you to find someone who "clicks" and is the "right fit" for you). Many of Dr's specialize in a specific Diabetes/Endocrinology “area” so you have options in terms of who you see. Because this was our “initial visit” they automatically scheduled Saul with someone - and in the end- we were very pleased- so we agreed to follow up with her for our next apt.

 

Other than the wait (which I had mentally and emotionally prepared for) I was most concerned about meeting the Dr. I loved Saul’s former Ped Endo and had very high expectations… I’m happy to say they were exceeded at this first visit. Our Dr. was so thorough- so detailed and so great at communicating and explaining that Jeff and I seriously walked away saying… “Wow. That was awesome.” She also had good bed-side manner – suggested we take a half an hour lunch break between appointments and even walked us to the hospital cafeteria. Needless to say… I felt a huge burden lifted.

 

We – literally WE (the Dr. and I – Jeff was wrangling Saul during most apt’s…lol) sat and reviewed Saul’s data which they uploaded from Carelink. WE sat and discussed his A1C which upon finding out was an 8.4 nearly caused me to melt down. My memory is fuzzy- but I’m pretty sure she had to scrape me off the floor and hold me up for a good minute and a half… I was prepared for a “higher” one… but NOT prepared for an “above 8.”

 

 

The Dr. on the other hand was totally okay with it- and said it was great. She showed me the print off where 8.5 and below is the “target.” She said, “I understand you are shooting for perfection- but you have to realize you are doing a great job and you won’t always get perfect A1C’s.”

 

 

We both agreed that our first and most important “target goal” was to start “smoothing out” those peaks and plummets in blood sugar levels. Saul’s been on quite the roller coaster for the past month or so- and appears to be extremely sensitive to insulin corrections – so WE made a number of adjustments to bolusing and left his basal rates alone for the time being.

 

She also ordered blood work to test for Celiac and a few other “type 1 related” diseases and issues. She also talked about the varying types of diabetes “within Type 1” and wants to try and find out “exactly what we’re dealing with, to know how to go about a treatment plan for managing his care.”

 

 

*Because... side note (not all Type 1 Diabetics are the same) I have to keep telling myself this over and over and over and over when I listen to someone say... "Well so and so's kid... has so much better control... so and so's kid NEVER has lows... so and so's kid never had to deal with any of this stuff."

*Because... (second side note) I take it all so personally- as a reflection of my performance as a Mom and a Type 1 caregiver... I know... I need to get over it. Already.

 

Jeff and I were equally impressed with the other specialists we saw during our visit. I felt like I easily bonded with both the DE and dietician (who I think I cracked up a good 65% of the time). The Clinic encourages you (like with your Dr) to find “someone you click with” in terms of the other team members and I will def. follow up with them next time.

 

In general- most of what was reviewed and discussed – I already knew- but am happy to have walked away with a way more detailed “step by step” instruction guide on “sick day management” and treating ketones.

 

Oh... and we also now treat at 80 as opposed to 70.

 

All 4 specialists encouraged communication and all 4 took pride in the fact the Clinic offers so much support through communication (because of the number of staff and resources).

 

They have a 24 phone line.

They return same day calls.

Nurses rotate taking calls all day.

 

I was told twice by the D.E. “You have a Type 1 two year old. You are a priority. If you need to speak to someone regarding a high or low episode you tell them… I have a two year old. You will be made a priority.”

 

I was also told by the D.E. “If you ever- talk to someone on the phone who comes off as rude you ask to speak to their direct supervisor. You are dealing with a Children’s Hospital. You have a child with an illness. You deserve excellent care.”

 

So. At the moment. For right now. Despite the drive. I’m sold.

 

Oh… and they have a pretty awesome Fire truck in the waiting room which kept Saul entertained for hours… literally. So I think he's sold as well.

I'll leave you with a few documented photos of our adventure!

 

Excited for a trip to the Aquarium!

 

 

Entertained everyone by his constant yelling of "Yee haw Froggy"

Mesmorized

 

 

Always my favorite part of visiting the Aquarium

 

Wanted to "get closer and closer and closer"

LOVED the sharks- his favorite

 

 

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Penguin watching

Coulda played with this thing for hours

Ackward. Eating tuna while at the aquarium?

We begged and pleaded... just come lay down and take a nap... he's saying... "let's go on an adventure!"

Swim time

This kid LOVES swimming and kept yelling "I'm a swim-teamer"

Saul and I had the entire pool to ourselves... and it was fabulous!

Pumped

Annnnddd.... then the next day... lol. He was actually in a great mood all day... just making faces here!

LOVED wearing the backpack... which was pretty adorable

 

 

He kept checking himself out in the reflection saying "I just like Dora"

 

 

He's two- and he knows all the routine... lol.. he seriously is a pro.

 

E2 Will always be easy to remember

This might just be my favorite pic of him from the whole trip

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He was so so so so so so good for HOURS... and HOURS as we met with all the different folks. I planned ahead and got 5 little "dollar store" gifts for him to un wrap through out the day... to try and keep him busy and "good" LOL... which he totally was

Ended the day with blood work at 4:15- He's just like EH and has to "watch" the entire process

Still smiling... still wearing that backpack... enjoying a "treat" for being so good after 7 and a half hours!

This was 2 minutes after I buckled him in - wiped - out-

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.

Which came first...

“I just want to pet you”

Not something you typically hear (or want too-  for that matter) from those in the medical profession… like… say… your child’s pediatric endocrinologist.

(I won’t lie… sometimes I wonder who’s crazier… I guess that’s why I like her so much).

That… and… well… she gives great hugs.  

I saw this shirt today on Pinterest.

 

It made me chuckle.

It’s no surprise to anyone who knows me- or who has lived with me, that I might just have a “touch” of anxiety. Accepting the position as Saul’s full-time pancreas has in no way helped this pre-existing condition. In fact, as you might have guessed it’s only worsened the situation.

It kinda all hit on Wednesday at our 3 month A1C checkup when the apt seemed to be more about me and the state of my mental health than Saul.

“You guys are doing everything right.”

-          “But the seizures… they were so… bad”

“He’s a typical type 1 toddler”

-          “But his numbers are all over the place”

“It’s really hard at this age… but you’re doing beautifully”

-          “But food… food is awful… it’s a huge issue in our house”

“You have to start getting sleep. You need to sleep. If we have to run him high we will…. You need sleep.”

-          “But the lows… THE LOWS!!!”

“You have to see that you guys are doing all you can do, it get’s easier… it will get easier.”

 

*sigh*

A1C – 7.9 (great, thumbs up, keep it up)

Weight – 28 lbs (growing… that’s good)

Height- Can’t remember… (but growing… that’s good)

Blood pressure- don’t remember… (but fine… no worries)

Development- right on track

Attitude- typical crazy 2 year toddler (diabetic or not) as evidenced by the screamed NO’s and light-switch temper tantrum.

*sigh*

It’s not endless finger sticks, not blood, not injecting harpoon needles into thin skin, untangling pump tubing…

Right now. At this very moment… it’s the toll diabetes is taking on my mental health. It’s the crazy nature of the beast…. That you can try and try for perfect BG’s and never get them… you can go to sleep one night with excellent BG’s and wake up the next morning to a hypo seizure… it’s the constant worry (no matter how much I try to not think about) of future complications… eyes, amputations, kidney dialysis…

I put Saul down for a nap today and I gave him a cuddle and a squeeze.

Me: “Saul you okay?”

Saul: “Uh-Huh”

Me: “You feeling okay?”

Saul: “Uh-Huh”

Me: “Is Mommy okay?

Saul: “No. Mommy crrrraaaazzzzy”

Yep. That just about sums it up.

 

Saul during a diabetic high (video)

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

Shew Wee... is it Friday yet?

What. A. Week. AND IT'S ONLY WEDNESDAY (it is Wednesday... right?)

Sunday: We recovered from the absolute madness of Saturday and Evans Orchard. We all took naps (well Mawmaw who never naps) didn't take one... but I'm pretty sure the rest of us did. I did. And really... that was all that mattered. Sunday night we took the kids to Gattitown for Diabetes Education Night which was sponsored through the company Animas. We were one of two families there. We got some sweet free diabetes swag. Harper scored 15 dinosaurs, and two stuffed animals. This girl is either super lucky or really, really, good at playing "carnival" games. Jeff swears the latter is true. Either way... she had a total blast... and... well... Saul ran around like a crazy TWO YEAR OLD... screaming "No" at everyone and everything. Pictures can be viewed here.

Monday: I did an observation of Harper's Montessori classroom in the morning. It was incredible. I was amazed.. It made me miss my kiddos at school. I am blown away by the progress Harper has made in just a short two months. She is already reading simple words, spelling and mastering so many skills. Her ability to focus and concentrate on work is fascinating to watch in the Montessori setting. I hugged Ms. Watt (her teacher) and told her I was grateful- I would have kissed her but I thought that might have crossed the line. From one teacher to another I will forever be appreciative that Harper's first introduction to "school" was in a caring, rigorous learning environment, with a teacher who encourages her to be an independent, well-rounded, life-long learner. *Can I also give a heart-felt-shout-out-virtual-hug and kiss to Grandma & Pap... without them... Harper would not be having this experience.

Tuesday: Saul had his 2 year checkup. Prepared for the inevitable meltdowns... a possible "hulk out" high or a "lethargic low" I packed as much "crap" as I could fit in my book bag purse…it entertained him about half the time we were there... the other half of the Dr's apt was spent with me repeating "no" and chasing him around as he attempted to pull off the tegaderm on his leg site. Stats: 30 some inches tall? 27 some lbs? (I think?) not really sure about percentiles and all that jazz... just know we got a clean bill of health and are growing and gaining weight beautifully... normally... like any kid... like a kid who wasn't diagnosed with diabetes at age 15 months. I have quickly learned that growing and gaining weight is critical for young children with an early T1 diagnosis. So far... 9 months in to diagnosis... we're doing great.

The girls had and eventful Tuesday afternoon- filled with a trip to the library for new books AND meeting a not-so-friendly, overly-feisty, fast and furious "turtle" that came to visit the Grimes-Sebulsky house for a few hours. Folks... it's the little things in life. lol. Seriously.

Now that I've bombarded you with 500 links... I'll leave you with a few pictures.

 

We've had some random breakfast guests lately

Solly & I enjoying a ride.

Little Solly looking not so "little"

Scored "D" swag

 

Girls making Saul bday cupcakes

The boys enjoying aforementioned cupcakes 

Harper's 2-hour pet "Leslie"
 

EH & MD posing with "Leslie"

 

A quilt in progress by one of Harper's classmates. 5 year olds in EH's class are sewing individual 9 piece quilts. I love it!

 

One of the books we checked out at the library yesterday. Preparing our kiddos for our future DAD!!!

 

Oh... yeah... have you heard!?!?! Solly is on his way to getting a diabetic alert dog? Keep up to date here and here. Thank you to everyone who has donated and spread the word! Keep the donations rolling. Lil buddy says "Tank Tu!" 

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.

Insomnia, FEAR and twitter. a random post.

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

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

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

2 things.

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

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

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

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