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.

Fa. la. la. la. laaaaa.... enough is enough.

Possible Blog Post Titles/Topics

 

Hospital Vacation:  

It was kinda like a special night away from home... except I spent it with a sick kid, slept on 5 inches of a bed, and wore puke-covered clothes for 10 hours straight.

 

The Feral Third:

Taken from a text I sent my friend Wayne, with regard to the thought of a "hypothetical" third Grimes-Sebulsky child... "Um. Yeah. At this point… it would be raised by wolves... or Harper... I’m not sure which would be worse..."

 

If you want him come and get him....

Taken from another text I sent out to close friends and family after debating whether or not to leave one of two -hysterical, fit-throwing children in the buggy at the store. "If anyone wants Saul... he'll be at the Hamburg Target, up front near the checkout... he's the obnoxious, screaming toddler in the middle of the meltdown… be prepared… it’s worse than Chernobyl… and he’s all yours for the taking." Apparently Mom was not amused.

 

35. 103. 101.

(No... those are not lucky lottery numbers). Last Sunday when I was the only "functioning" human in our house... I had a toddler with a BG of 35, a preschooler with a temperature of 103 and an out-of- commission-fevered husband whose temp checked in at 101.

 

WWJD?

Load up the sick, drop them off at the ER, and then quickly drive away or open a bottle of wine, partake of the entire contents, surrounded by the sick and needy.

 

2013

You will be better. I will be better. We will all be better in 2013.  

The Hour I First Believed

It’s funny the comforts people turn to in times of tragedy and despair.  Those of faith rely on prayer and religious text.  Some folks find escape through numbing agents… alcohol, pills, etc. Others take out their stress on treadmills, concrete paths and country roads. Mom (no shock) turns to her art and creating.

I get lost in books.

If I had my choice (as if I don’t) I’d rather rely on running… well… maybe running and praying… simultaneously.

A number of events have transpired over the course of this month (not just Dad’s recent car wreck) but several conversations that have occurred and things I’ve read… it’s all kinda lead me to a point where I’m tired of writing…. especially about diabetes, but also in general (though I do have a plethora of funny stories I could tell based on the nights I stayed with Dad last week).

I’ve always said… airports and hospitals… two of my favorite places to observe, speculate and analyze the human condition.

In between my “pretend sociological research” and “pretend nurse playing,” I buried myself deep between the pages (for your imagery… I read everything on my iPhone) of the book “The Hour I First Believed.”

Wally Lamb.

Somehow… he managed to throw me a life raft.

Again.

The book is not new- been out for several years actually. I’d picked it up several times… read through chapters… set it down… repeat the process when I’d be waiting for EH at ballet or between 3 am BG checks with Saul.

This time, though, given my circumstances, I was able to devour the book in its entirety from cover to cover without stopping.

It is a fantastic read and definitely falls into the category of (if you love East of Eden… then you’ll like- the measure by which I base all books ). 

If you enjoy stories about human suffering, nature vs. nurture, family, despair, violence, hope and the ultimate quest to understand good and evil… then you will enjoy.

If you’ve already read it- I’d be curious as to your reaction- especially if you’ve read his other novels.

If you’ve not heard of Wally Lamb I’d encourage you to “google him” and read the reviews of this book, along with his others.

All I will say is that I’ve added Pablo Picasso’s print “Minotauromachy” on to my Christmas Amazon Wish list.

Oh…. and I dug out the hand-written-somewhat scribbled- Thank You letter I wrote Mr. Wally Lamb fifteen years ago… in the hour after finishing his first novel… and first believing.

November... You've been a bust.

And WV... Well... so far, so have you.

I've written before about the contentious relationship I have with my native home state.

All it takes is a walk through one of the local ER waiting rooms for me to start remembering why I left this all behind.

In the 19 hours I've been here I've witnessed an old, wheel-chair bound, cane-carrying-grandpa screaming profanities at the top of his lungs... Because "$&@*# I ain't waiting any $&@#* LONGER $&@*#"

I dodged the madness (literally) the crazy cussing geriatric swung his cane right at me... And as I passed through, I couldn't help but notice, and feel terribly sorry for the "Sea of sick people" who not only "looked" sick... but "sad" "poor" "dirty" and "hopeless."

My text to Sebulsky "Dear God I'm in that SNL skit "Appalachian ER."

Later as Mom and I were leaving we witnessed what appeared to be the "kin" of some deliverance folks... walking the parking lot. The woman wearing a hospital gown and dirty robe shot me death stares as I rolled my eyes at her "shoeless" feet.

Seriously? Seriously? You're walking the hospital parking lot barefoot? Is that legal?

Sigh.

The best...

I'm currently sitting here in the hospital room with Dad "snooping" on the neighbors... Because... What else can you do for hours upon end in a hospital room.... When I hear...

"Y'all I'm telling ya... There's days I miss the teeth... But LAH ZEE I sure ain't missing that brushin"

At which point I looked up and smiled at her and she shot me a toothless grin.