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!
