Low's and High's

Insulin went into the pump on October 21st.  We had our last meeting with Jenny in SF and she got us rolling with everything hooked up and working.

I could write 28 pages on the pump, but most of it wouldn't make any sense to you, so I won't waste anyone's time.

He gets insulin 24 hours a day. We have made changes to the amount of insulin twice already this week. For a quick example, every hour he will get .125 units of insulin.  Hardly any - but yet some!  Remember, we are trying to mimic the human pancreas the best we can.  We have since increased his hourly insulin for certain hours of the day to .175. Seems like a tiny amount, and it is, but that's what this is all about ... Tiny adjustments until we get it right.  We also changed his lunch carb ratio from 40 to 35 and back to 40 as he has been going low in the afternoon at school.

Low sugar is something we haven't had to deal with much.  Trey's always ran high and the scary thing now is, we were comfortable with that.  We were ok with 250.  Shame!!!!  With the pump, our new target is 100-150.  In the last 6 months we haven't seen numbers in this range much and when he would get to 150, we gave him food to increase his sugar.
With the pump, we have been having some lows.  Not scary, bad lows, but numbers under 100.  A couple things here:  1) his mood is sooooo much better when he is under 150 2) mom's mood is sooooo much better when he's under 150 and 3) We are no longer OK with seeing 250 on his CGM readings.  I have been trying to catch his lows before we hit 70's so we can provide a snack to bring him up instead of juice.  I really hate it when he has juice because he goes from under 100 to 300 in 20 minutes.  It's what the CDE's want to happen -- a fast rise, but I personally hate it because it causes such a mood swing that I almost need a Jagbomb to deal with him.  Lows will be something we need to keep an eye out for and it's very common with people on the pump.
We were so accustomed to Trey's meltdowns that we started to just figure that's how he's going to be. Well we know now first hand that high blood sugar messes up your emotions.  Uncle Jeff has made comments about that before, but until we actually got Trey in the right range with GOOD blood sugars, we didn't really see it. Now we do.

He wears the pump on one hip and the CGM on the other. I ordered him a SPIbelt so he can put them together in this nifty belt but it seems to be causing some problems with the tubing on the pump getting kinked (which leads to insulin not being given correctly).  He is able to sleep with the pump on and it doesn't cause him any grief which is nice.  He isn't a fan of changing the site every 3 days, but he says it's better than four shots a day in the tummy.

Today they are having a "holiday party" at school and they made a Witch's Brew.  I've worked very close with the nurse and teacher to be sure Trey get's to participate in this.  We are looking at roughly 25-35 grams of carbs of shit like cereal, chips, and candy.  I cringe when I think about it, but I also realize that it's a MUST that he participates.  We will be giving insulin to cover this snack-mess.  He's a kid first .. Diabetic second.  Enjoy your party buddy!!

The Pump

The day has arrived that Trey has the pump.  I find it (searching for the right word .....) funny (not the word I want) that the very day Trey was diaganosed, people were already asking us when he could get the pump.  It wasn't anything Jordan or I had thought about yet.  We had so much to learn before "the pump" was a factor.  I became annoyed with everyone's unsolicited advice.  "Get an alert dog" or "Get him the pump."  While I knew people meant well, there was so much we didn't yet know about diabetes and we knew that when the time was right, our doctor would help us with decisions like that.  

A dog is not on our radar.  A diabetic alert dog, in my opinion, is needed mainly for when your child has a lot of low blood sugars and you cannot catch them before they happen.  Some kids drop really fast, and in that case, it's impossible to catch before it's too late.  A dog help senses when this is happening and alerts the caregivers.  We don't need that (at least not right now.  Not saying we never will.). The other thing about a dog is that often times the dog catches the sugar drop before the child has a chance to FEEL the drop himself.  I want Trey to learn how he feels when he is too high or too low.  I don't want to rely on an animal to tell me those things - and then Trey is 18, the dog is dead and off to college he goes never knowing how he feels.  Nope.  Not the right thing for us at this time.  

The pump is something we knew we would want to do when the doctor gave us the OK.  There are many different types of pumps.  After our appointment in August with Dr Gupta, he informed us the only pump he would allow Trey to have is the Medtronic pump.  We trust him.  Yesterday we spent the day in Sioux Falls with the CDE team and dietitians and discussed how this pump will change Trey's life.  Thankfully, we didn't have to deal with Jenny, but rather a gal named Teresa.  We actually had Teresa the first day in the hospital and we liked her. Jordan and I had to take some online courses about the pump and all of it's functions and then Teresa went over things in greater detail and programmed things that pertained directly to Trey's case.  My favorite part of the day was when she looked over his numbers and asked what the food ratios were and when I said "57" for lunch and dinner she gave me a look like "WTF?" I said we were at 60, but Jenny changed to 57 after we begged her to give more insulin.  Teresa said "Well he for sure needs more insulin.  I will be changing these ratios." And after a few minutes of figuring and averaging, she lowered his lunch and dinner to 40.  The most drastic change we've ever had!  I am a little nervous for it as I don't want him to go low, but this way he can have foods that I typically restrict such as bread, pasta and milk!  We've been begggggggggging Jenny for months ... Five minutes with a new CDE and BAM! Thank you!

I don't really want to get into great detail about the pump's functions but to simplify things, I will give  you the jist of it.  The pump will give Trey insulin 24 hours a day.  We programmed the pump to give him a certain amount of insulin every hour.  With the pump, you can change how much insulin is given every hour.  He will get a certain amount from 9pm to 4am (every hour) and then at 4am we lowered the dosages until 9pm every hour. He will still get extra insulin with his meals.  You recall my first posts about the math we had to do in order to figure out his dosages?  That's no longer needed as the pump does that for us.  We tell the pump how many carbohydrates he eats and it gives him the dosages it figures now.  He will wear this pump non-stop.  It can be suspended for swimming, shower, hockey, etc but never more than an hour at a time. (This will change as he grows and insulin is more) He had a hard time figuring out how to potty and sleep as it's clipped to his pants like his CGM.  I should take bets to see how long before he rips one out!? 

So the pump is on and we change it every three days.  Until the 21st, he is using saline in the pump just so we can get used to the functions and buttons on the pump.  We go back on the 21st and see where his numbers are again and then we use insulin.  It's both exciting and nerve wracking at the same time. We are hoping with the pump his sugar numbers are between 100 and 150 and I'm hoping that with numbers in range, his mood improves!