Sunday, May 19, 2013

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
 
 
Add caption

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


Add caption


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-







Thursday, May 9, 2013

Can only mean one thing...

Sometimes I wish I could write and post stuff as "the real me." 

I'm always censoring myself... I know some of my audience is younger and quite a few more would be totally offended by things I might say. It's the reason I have such a lame title to this post... I've got a much better one in my head... But I'll keep it there for now and spare you. 

I'm blogging from my iPhone at 2:15 am which can only mean one thing... 

No I'm not up sneak-eating frozen waffles. 

I have a serious love-hate relationship with Saul's Medtronic CGM. At this point in the game I would never "not" have him wear it (despite the god-awful process of insertion) and if anyone ever asks me... Should I wear one? Does it work? Is it useful? Worth it? I'm quick to answer with "Yeses."  

It is however, just a device. A technological tool that while useful- sometimes fails. And when it does fail... when it lets me down, when it seems like such a hassle, like a waste of time and effort and energy... I have to stop and remind myself... It's all you've got and its better than nothing. 

I woke up to the alarm of "FALL RATE."  I quickly check (after a bad low of 47 last night -can't take any chances). 

CGM reading... 127 (two arrows down). I run and grab his meter... check him... 

He's 258 (high blood sugar). 

Okay, so sure I'm thankful. I'm glad I'm  not up dealing with a low. I know at least I'll go back to sleep after posting this- had his CGM been accurate and had he truly been crashing... It would have been time for a pot of coffee and bad late night re-runs. 

Technology is awesome.... until it fails you. 
 
Sure there are folks out there managing diabetes care with minimal resources- the old "teacher chalk board and chalk method." It's what they know- what works for them- I get it. 

For now- till we get another tool in our tool box- I'll deal with the frustrations and limitations of today's modern technology.