Exhilaration + Sleep deprivation – Confidence X Stress = Day 1
{insert longest sigh of my life.}
I won’t lie… the shift from insulin injections via syringe to pump therapy has been a challenge. Aside from the initial insertion Saul has pretty much been oblivious- which was the exact opposite of how I thought he’d react. I imagined the first day being a constant battle with him ripping out the tubing, pushing buttons on the pump (like he does on my phone) and eventually discovering he could yank out the insertion set---but instead he did great and Sebulsky & I ended up being the ones stressed out over the new learning curve.
I was so excited and ready to get him on the pump. I thought I had mentally prepared for it all… until… well… 9 a.m. Thursday morning when I realized… oh crap… this is really happening. Don’t get me wrong… it’s gonna be good… great actually… but like most good things in life- it’s gonna take work .
Tuesday night I stayed up way too late searching this site.
I ended up buying this.
Even though I wanted this… really I just wanted to buy it for Sebulsky- cause I knew he’d love it.
After researching and asking around I decided to also purchase an insulin pump harness for Saul. Most of what I’ve read online about toddlers on pumps have shown or mentioned active children or toddlers wearing harnesses. So at 11:30 pm in an act of desperation I got on Amazon and bought this.
I’m embarrassed to say I paid quite a pretty penny to have it shipped overnight in time for Thursday morning and am STILL WAITING FOR IT’S ARRIVAL (still waiting as of 4 pm FRIDAY afternoon…sigh).
Which meant that I started stressing out Wednesday night around 8 pm when I realized… AHHHHHHHHHHHH!!!!!!!!!!!!!!! We’ve got nothing to put his pump in… AAHHHHHHHHHHHAAAAAAAAAAAAAH!!!!!!!!! WHAT ARE WE GOING TO DO!!!!!!!!!!!!!!!!!!!!!!! Does Walmart sell toddler fanny packs? AHHHHHHHHHHHHHHHH!!! ABORT mission! ABORT mission! POSTPONE! POSTPONE!
I woke up Thursday morning more stressed out about “pump containment” than the actual procedure of hooking him up to the pump.
Jennifer showed up around 8:45. We went through several hours of “training ” paper work and eventually ended with a culminating “test” of our knowledge and ability. Looking back the whole thing was pretty funny and I’m sure Jennifer thinks I’m nuts because you seriously would have thought I was defending a dissertation… or taking the MCAT… or completing the Bar exam. Jeff was joking with me later and said… “Courtney the look on your face when she was going over his doses and doing calculations was “classic.” Needless to say I was mentally exhausted by 9:15.
I “assisted” Jennifer with his initial insertion. Sebulsky will be “assisting” me Sunday when we change out his site for the first time solo.
He survived (as did Jeff) this first go around. Saul appeared to be more confused about why some strange lady and I were holding him on his stomach with his pants down- than he was about actually having a needle temporarily inserted and taped to his butt cheek.
In case anyone is curious- Saul is using the Sure T infusion set.
“The Sure-T infusion set is a steel needle infusion set with an additional adhesive pad to provide extra security against needle dislodging. The Sure-T infusion set is intended for insulin pump users who prefer using a very fine 29g needle to infuse their insulin rather than a cannula.” (Medtronic)
He looks ridiculously adorable.
Like a teeny tiny little physician carrying a pager…. that’s way to big for him.
It’s hard for me not to take 500 pictures of him with his pump…. Cause I think it adds to the overall cute factor… and I know without a doubt the chicks will dig it.
The not having a pouch/harness/thing-a-ma-jig has not realllllllyyy been that big of a problem- yet. We’re sticking it in pockets or hooking it on the back of his pants or putting him in overalls until the over-priced ugly denim harness arrives… hopefully tomorrow?!?!?!
Sleeping has gone FANTASTICALLY (knock on wood… don’t jinx it Grimes… don’t jinx it). He’s taken two naps with the pump in his pocket and slept the entire night with the pump hooked to his back and did awesome. This was my overall biggest concern… I know… Sad. Right? But it takes a lot of trust when he’s by himself…
And speaking of trust…. I will be working very hard over the course of the next 3 months to build trust that someone else will be able to care for him, be able to operate his pump, problem solve, count carbs, treat his highs and lows…. It’s not going to be easy. It will be the hardest thing I’ve ever had to really face. I’m hoping I’ll be able to conquer my fears and anxieties and put my trust in someone else who will ultimately be solely responsible for his care. (Can you tell I’m having some real issues… If anyone would like to offer up private counseling I’m in).
Anyway…
Our first BG reading on the pump was a low we had to treat.
Our second and third and fourth and fifth BG readings were high… 323, 383, 380, 352… all of which we’ve had to treat.
Luckily… ketone tests have been negative and the lowest I’ve seen since leaving the hospital- a good sign!
It’s stressful.
It’s exciting.
It gives me hope for better control of this crazy disease that somehow randomly targeted the sweetest boy I know.
P.S.
And of course in the midst of it all… in typical Sebulsky/Grimes fashion our Heating/AC unit died… cause you know… we had to have something to take our minds off of Saul… since Harper’s not here demanding attention.
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