Pumping update

As you all remember last week we were blessed to receive Clifford's insulin pump in the mail. Well now everything is in place and he will "OFFICIALLY" be on the pump on March 22nd. On March 16th, he gets hooked up to saline, and we begin our pump training. I've gone through the books and practice tests, I've done all the training on the education website as well, and went through their practice tests. I've even gone and read his pump manual. I think the next step is to look over our Nova Max link manual. We received our OneTouch meter, and I had previously called Nova Max to request a Nova Max link meter. The reasoning for this is we used OneTouch in the past and absolutely hated it. That is why we switched over to Freestyle Lite, then when CCS Medical stopped providing the Freestyle Lite Strips, we switched to Nova Max, because I actually had a Nova Max Plus at home giving the ketone testing a try. We ended up switching over completely to Nova Max because we liked it much better than Freestyle. Freestyle is only used in our house at night time now because of the handy dandy little light on the end. Makes it much easier than carrying a cellphone up and trying to use that as the light, or turning on Clifford's light and risk waking him up.

I've done the practicing of the bolusing, and setting multiple basal's with the pump as well. I'm very ready for him to start, and super excited about it. The funny thing is when she called to set up our Insulin start date it was actually on the date he had his diabetes clinic (3 month check up). So during the morning on the 22nd, we'll be meeting with his endo, and diabetes educator as well as the nutritionist like we always do. We'll get his A1c, which I'm curious about as I always am. We were 7.5 at our last check up which disappointed me because we were 6.8 at our previous one. But I try not to be too hard on myself as since he was diagnosed we've ranged from 6.8-7.5 with a couple in between. I don't think that's too shabby while on MDIs. During the early afternoon on that day is when we start on insulin and begin our pumping journey. I will keep everyone updated with how things go as I hope it will help those that are considering pumping see how the process works.

I am prepared to have a few weeks to months of chaos with the pump while we establish basals that work and tweak his ratio's etc. I guess it doesn't help that during this time he's growing too right? But even so I will update hopefully daily to let everyone know how things are going and how we're handling our pump journey. Clifford is excited as he thinks the Mio infusion's are tiny in comparison to his syringes. He is also excited about the idea of being able to participate in his care a little more and learn how to bolus himself for meals. He tried giving himself an injection with the help of myself once, but didn't care for it. I have a feeling in no time he will be interested in changing his own infusion sets as well. It's been almost 2 years in getting here. We are 1 week out for his 2 year Diaversary. I have decided to make him a cake, or cupcakes (not sure which), his favorite meal which is seafood enchiladas, and write him a letter telling him how excited and proud I am of him for coming so far in the last 2 years. I really hope he will have a fun day. He doesn't know anything about this, so let's keep it a secret! I want to surprise him after school with it all!

A Day in the life....

I thought it would be an interesting concept to share with you "A Day in the life... With type 1 diabetes"... I cannot speak from a first person view, because our T1D is Clifford. However I can speak from a parent's point of view to help others that might not be familiar with T1D understand what is involved in a day in the life of a child with type 1 diabetes... So let's start at wake up....

Wake-up: Blood sugar is tested (a tiny little needle is pierced into his lil fingertips, which btw are already so blistered over, blood is collected onto the strip)... Wait 5 seconds for the beep and to reveal the start of our day....

Food is measured, or weighed out to the exact serving size to count all carbohydrates, this includes all food and beverages if any with carbs such as milk for cereal. The total carbs are then divided into his Carb to Insulin ratio. A nice little ratio that tells you how many units of fast acting insulin (Humalog for Clifford) he will get to eat his breakfast. His breakfast ratio is 1:18, this means he gets 1 unit per 18 grams of carbs. As an example this morning 1 cup of captain crunch berries was 35 grams, 13 grams for a cup of milk, and 26 grams for some pudding he wanted to have. Total 74 grams of carbs this equaled out to 4.1 units. However you now have to take into account their blood sugar number. Today Clifford woke a bit high at 265. Now you have the added fun of doing more math in the morning by finding out how much he gets for correction. The correction simply means to help bring his blood sugar into the target area, his target is 100. You take 265-100 and divide by his sensitivity(how much 1 unit of insulin will bring his blood sugar down) Clifford's sensitivity is 120 with this you get 1.4. So you add this to the 4.1 and get a total of 5.5 units of insulin.

After all that math it's time to give him an injection so he can start to eat. Another nice needle (bigger than the lancet this time) jabbed into his skin to deliver life saving medicine (sounds dramatic, but it's the truth).

After all this in 2 to 3 short hours it's time to do it all over again for Lunch.

Steps:

1.Check blood sugar (more blood)

2..Math time (count carbs(this is the weighing and measuring part), figure out insulin or correction if needed)

3. Injection time (another jab or poke however you want to look at it)

4.EAT!

Fast forward 2 to 3 short hours later (granted he didn't feel dizzy, or hungry, or have a headache or tummy ache) all of those could be a sign he is either high or low and would need to test his blood sugar.

Snack time

1.Check blood sugar (again more blood, you get the picture here)

2. Math time (food weighed, measured, carbs counted, figuring out the insulin and correction if needed).

3.Another jab of the needle

4.EAT!

2 to 3 hours later

Dinner

1.Check blood sugar (again more blood,)

2. Math time (food weighed, measured, carbs counted, figuring out the insulin and correction if needed).

3.Another jab of the needle

4.EAT!

2 to 3 hours later and it's bedtime. Bedtime is not a fun time for those with T1D.

Now our bedtime routine is slightly different then the previous times above

1.Check blood sugar (again more blood, you get the picture here)

2. Math time (food weighed, measured, carbs counted, figuring out the insulin and correction if needed).

3. Not 1 count them 2 injections (1 to cover carbs (fast acting) and 1 for his 24 hour basal insulin)

4.EAT!

I'd love to stop and say our day ends here but that's not the case. For the most part every night at midnight, Clifford gets his blood sugar tested. Here is a few examples of what has gone on during previous midnight testings.

LOW
1.Tested blood sugar (LOW, 68)

2.Run downstairs to get a juice box, and pixie sticks just in case

3.If I'm lucky I can wake Clifford up enough he starts drinking the juice box, or there are the other times he will not wake up, that I have to open his mouth and start pouring pixie sticks in it. Sounds easy enough except the opening of his mouth, he fights me in his sleep, I have to basically hold him down, and pry open the side of his mouth, hold it open, hope he doesn't bite me and pour in the sugar.

4. Re test his blood sugar in 15-20 mins (If above target for night time 120) good, go back to sleep for 2-3 hours, if however he is still low, repeat all the above steps every 15 mins until he is back up to target.

Now here is an example of high

HIGH

1.Test blood sugar (high 325)

2.Go back downstairs, get a syringe, alcohol wipes, prepare the insulin in the syringe, take it back upstairs

3. Turn Clifford over (bum shots for correction during the night work best, ) If I'm lucky he'll sleep through the injection. But then there are other nights he moves like a crazy man and I have to make sure I have a tight hold on him before injecting and try to hold him down with one arm, and legs while injecting (getting kind of difficult with him being 8 and 4ft tall , only 14 inches shorter than mom)...

4. Go back to sleep retest in an hour to make sure he is coming down good, but not too much.

2:30-3am (this is when Lantus (24 hour basal insulin) likes to peak, so it's best to check to make sure he didn't drop low. If all goes well he's in rang and I can go back to sleep till 5:30-7ish depending on when I decide to get up. However if we are low again, well we repeat that fun low process.

After all this it's back to wake up time and to start all over. This does not include those days when we get crazy lows out of no where because that is usually 3-5 more times testing blood sugar during the day.

Welcome to the life of T1D, blood, needles, sometimes tears, cranky behavior from highs, annoying behavior from lows, fear of overnight lows they won't wake up from, lack of sleep, caffeine fueled.

In all it's not that bad :) Clifford is alive and we do the best we can to keep it that way along with healthy to avoid any complications as he gets older, and in the process teach him along the way of how to care for his diabetes responsibly.

Now this is just the life with T1D and injections.... This will all change soon when we're on the pump, and I plan on writing in the life of T1D and pumping for you all to see.

-Bridget

A little excited... Understatement

To say that I am a little excited about Clifford starting on the pump is a HUGE understatement. Included in our pump package yesterday was a bunch of what I referred to as "homework". This all was to be reviewed and practiced, etc before we start our pump training. At first I would say I was a bit overwhelmed at the thought of all this work. However I am happy to report The basic of insulin pump therapy, and a step by step guide to the pump as well as the owners manual to the pump was all reviewed and completed yesterday. In fact I finished up the practice portion of bolusing, setting basals, suspending, etc at around midnight. The CD that you see included went over all that plus some added extra's of learning how to fill the reservoir, the cannula and the tubing, as well as inserting the infusion set. All that was completed today. After all my studying and practicing I'm fully ready to get started in our pump journey!

How nice it would have been to have the pump in action last night when a correction was needed at midnight. He was 325, and had to be given a correction via syringe, would have been much easier and nice to press the button to bolus rather then to stick him on the bum with a needle. However he didn't flinch, still higher this morning but definitely better than 325.

This morning was a wee bit interesting for us at our house in the fact that Cliffords C:I ratio was changed for breakfast to 1:18. Now this morning he was 235 which meant he needed to be corrected and for that was 1.2 units. Now with what he wanted for breakfast the total units to be given was 6 units. I was a bit concerned with this large amount at one time. He hasn't really had over 5 units since diagnosis, but he is a growing boy and we're trying to combat the highs we've been seeing at school.

I called the nurse and he was 75 at lunch time. A little under target, but definitely not high. Now hopefully we got the highs at lunch under control, and now I'm looking onward to snack. I'm still noticing highs overall except a handful of times at snack time. I'm thinking it's time to make a change to his I:C ratio at lunch as well. I'm going to wait it out another day to see if the trend continues then give a call to his educator to discuss changing his I:C ratio from 1:40 at lunch to 1:30 to try to ward off some highs.

It's official the pump has arrived!

So Clifford's new insulin pump arrived today. I normally would say his new shiny blue pancreas arrived, but those in the house (not naming names) say it's a pump. I guess they are partially correct in that it's not an exact replica of the human pancreas. Because think about it. The pancreas measures the amount of glucose in the bloodstream so it can give out the exact amount of insulin needed to maintain glucose levels. While the pump will provide Clifford with his insulin we will still have to monitor his blood glucose levels. So technically speaking the pump and ourselves are his new "pancreas".... Yeah I'm silly but whatever! Today was a very exciting day knowing that it would be delivered today. At one point ice was melting off the roof and it made a loud sound, I jumped up and said UPS was here, but nope just ice.

In addition to the pump we also got some Glucose

Quick Sticks to try in treating lows. I will admit openly now that I did "test" them out first.. I was curious about the taste and if Clifford would like them. I am happy to report they were quite yummy, but I only tried a little bit, really wasn't in need of fast acting carbs at the time! So now onward to pumping we go. Included with the pump were the pump supplies needed for a month worth of pumping, and a boat load of homework for myself. Tons to read up on and practice, and take some quizzes to make sure we are ready to fill in the gap and help become a better pancreas along with the pump for Clifford, there I said it PANCREAS!!!

Almost 2 years in....

Well here it is almost 2 years into Clifford's diagnosis of Diabetes and we are finally making some headway. I received word on Thursday that his pump was being shipped out that day! Took only 2 days after being told it was approved that it was shipped. It was all very exciting in choosing the color, his infusion sets, the tubing length, etc, etc. I got off the phone with goosebumps. I think though I am the most excited of everyone about the pump coming including Clifford. No idea when we'll actually start pumping. We are supposed to get a call within a week from the trainer to get us scheduled for training and starting him on saline first. I know it's all going to be very overwhelming in the beginning, just like diagnosis all over again. But I also know that this is a better choice for Clifford for his diabetes management, and it will most definitely be worth it.

2 years.... That's like a lifetime in D care when you think about it. Diabetes care involves 24/7 watch and management. Technically it's been 17, 520 hours of constant care and attention. I know there are others out there that have done this way longer, and I commend all of you! I'm just very excited we are finally heading in the direction of treatment we were wanting. Only one last step of getting the CGM approved and we will be there! Clifford's already been prepared that the first week on the pump will not be too much fun. He will just be on saline and will still require his injections daily (6 x a day). So in addition to the injections we'll be changing infusion sites. But he also knows that after that week it's live on insulin and no more injections(unless needed). It's very exciting as we enter in a new "normal" for us. I think we just started getting used to our other "new" normal.

Last night D cooperated for the most part. Clifford really enjoys these peanut butter cookies we have, but they are pretty carb loaded, and at night time I do not like to give him a bunch of carbs. So I told him we were trying a test. 3 cookies is 26 grams. So 3 cookies for tonight it was with 0.5 units humalog, and 7 units of Lantus. He was 130 at 8pm, and 137 at 10:30pm, then 152 at 4am. But come wake up time (he actually woke up at 6:50) he was 68.. Yuck, just glad he caught it. So the test was if his blood sugar was good throughout the night we would let him have the 3 cookies, and a 1/2 cup of the carb smart ice cream (13 grams), so a total of 39 grams. Definitely more than I like him having. The reason is he seems more sensitive to the humalog at bedtime and tends to drop like a rock with anything over 0.5 units. For the 39 grams depending on his blood sugar at bedtime he will have to get almost a full unit. That's scary territory to me, but I'm willing to let him have his treat, and get up and test to see how it's working.

Back to the pump... It will be here Tomorrow! So Happy Valentine's Day to us. I told Chad if I could keep my mouth shut I would save it for Diagnosis Day (his D anniversary ) on 2/28, but I can't keep my mouth shut about his pump in the house for 2 whole weeks, so yeah not happening!

So almost 2 years in and entering into new territory soon with pumping. For those of you that pump and tips/tricks/words of wisdom you have would be greatly appreciated!

Ice Cream for only 13grams????

I wrote about an ice cream previously that didn't hurt Clifford's blood sugar. Well to my surprise today when grocery shopping, I came across Breyer's Carb Smart. Apparently they have vanilla and chocolate, but I only found vanilla. Good news is for 1/2 cup serving there are only 13 grams of carbs. We haven't tried this yet so I can't really say how it affect's his blood sugar, but you definitely cannot beat a 1/2 cup for 13grams.

I felt the need to let everyone else know about it and give you a link to the nutritional information so you could review it yourself. If you find that your kids, or yourself love ice cream but they just have way too many crazy carbs, you may want to look into Breyer's Carb Smart and give it a try.

Here is a link to their nutritional info: http://www.breyers.com/products/Carb-Smart/Vanilla.aspx

Valentines Day Carbs.....

Valentine's Day is fun for the kids in school, with all the pretty cards, and tasty treats. However it can be a headache trying to figure out all those carbs. For the most part a lot of treats are labeled now a days which saves a lot of work trying to guess or SWAG the carb count. When we put our treat bags together, we make sure to label the number of carbs in the treats, because Clifford has a friend in his class who has Type 1 diabetes too. So I am hoping by labeling them it makes it much easier on her parents when it comes to carb totals.

But if you are the lucky ones that get the tasty treats without carb totals, take a look at Calorie King (which btw is an awesome book), they have a bunch of common Valentines Day Candy carb counts listed here:

http://blog.calorieking.com/2012/02/caloriekings-guide-to-valentines-day-candy/

Once we pass Valentine's Day it's onto Clifford's Dx Day. Still trying to figure out what to do for him that will make it a special celebration of a healthy year with Diabetes!

On a positive note, we got a phone call yesterday that his insulin pump was APPROVED! So he officially will have a new exterior pancreas. Although he likes to tell me it's not a pancreas just a pump, his pancreas is inside and it's broken. :/