That night dinner was Natalie's choice...hot dogs and mixed veggies. She enjoyed having her dessert a couple hours after her dinner rather than eating all her dessert and snacks with the meal to avoid an extra shot. See that cell phone looking thing next to her plate? That is the pdm that "tells" her pod how much insulin to give her. It also has a blood sugar meter all in one. Thankfully my D-Mom friend told me during our saline trial that we do not need to hold the pdm close to her pod the entire time it is delivering insulin. After the first beep she can run off if she wants. That was getting old keeping her still and holding the pdm up to her bottom waiting for it to complete insulin delivery!
So, what do I love about the pod after 1 week?
We can now give Natalie more accurate amounts of insulin to meet her needs. On shots, we gave her insulin in .50 and 1.0 units. With the pod, we can give her insulin in .05 increments! That is SO COOL to me! For example, this afternoon her blood sugar was 180. Before we would have just let it go and wait until the next meal to bring it down, but I was able to plug in her blood sugar and it calculated that she needed .20 to bring her back into range. With the click of a button she received the insulin and by dinner she was 148!
SLEEPING IN! Natalie has not been able to sleep in in over 2 years because she has always needed to get her morning shot on time. She is my late sleeper too, so it never seemed right to have to wake her up. She (and me) have been sleeping until 9am this week! This won't last long though since school is right around the corner. We still have the weekends though!
NO SHOT PREPARATION! All meal times especially the mornings are much more relaxed now that we do not have to get her shots prepped and administered at each meal. Meal prep used to take so much more time as well. With shots being given in only 1/2 unit increments, I was always trying to get the perfect amount of carbs for her meal so that I could round to the amount I knew worked best for her. (For example, if total carbs came to her needing 1.66 units of insulin, I always tried to add a little more carbs so it came to 1.75 and then would round to 2 units.) Now, if she only wants 7 carbs of strawberries, that is what she gets because the pod can give her the exact amount of insulin needed.
BYE BYE JOURNALS! Since starting on the pod, I have not been writing down every single bite of food that she eats! See all these journals? Those are filled with 2 years of notes documenting every bite of carbs Natalie has eaten at every meal, amount of insulin given, where shot was given, and every blood sugar. I thought this would be hard to give up because I like keeping track of this, but I was able to give it up after one day! I still have a journal where I document her pod changes and anything different that she eats so I can refer to it at another time, but I don't think I will be going through paper like I used to. The pdm stores up to 90 days worth of blood sugars, carbs eaten, and insulin given. I love it! I have already downloaded all her data once and sent it to our CDE to make changes, which also means bye bye manual logs!
NO BIG BLOOD SUGAR DROPS IN THE NIGHT! I know this can change at any time due to growth spurts and activity, but for now I am so amazed at how stable her blood sugar has stayed ALL NIGHT LONG! I was really worried about this because they started her basal rate at only .20 units of insulin every hour. (Basal rate briefly explained is the amount of insulin she needs to keep her steady in between meals and through the day and night.) This comes to only 4.8 units of basal in one day. She was receiving 12 units of lantus (long term) a day (6 in the morning and 6 in the night). When she was on shots, she dropped a LOT in the night despite us giving her a good protein/carb/fiber bedtime snack. We found while on shots if she was not above 130 or so at the 2am check, she needed juice or she would wake up way too low. If she was 130 or lower at the 11pm check and we didn't give her juice then, she would almost always be around 70 or lower by 2am.
We have been checking her blood sugar about every 2 hours, just to make sure she isn't spiking too high or dropping too low. Her blood sugars have been great ALL night long! The first couple nights I was so giddy about how stable she was that I couldn't go back to sleep after checking her at 4am. So we are getting less sleep than before, but hopefully we will feel comfortable enough to drop one of the nighttime checks soon. We've only given her a little juice at 11pm one time because we weren't sure if she would stay steady or not. Not having lantus in her system is a huge difference. I'm so glad to be rid of that one too! We even give her a little bit of insulin when she is above 150 and it brings her back down just beautifully. Here's how her first night on the pod went and she has been pretty much in this range every night, except now we give a teeny amount of insulin to bring the 179 down:
11pm check - 114 (we gave her a little bit of juice)
Midnight check - 179
2am check - 168
4am check - 155
Wake up at 8:45am - 149
SHE CAN EAT WHENEVER SHE WANTS! We are no longer tied to the clock. While on shots, I felt like when my kids were babies and nursing on a schedule. We had to be home to nurse at certain times and everything revolved around their nursing & napping routine. When they were babies the worse thing that happened was they cried the whole way home. With diabetes, there is no pushing the clock....when she needed to eat she HAD to eat or would drop too low, when it was time for a shot, she needed that shot to keep her from going too high.
Some people told us that it is common for kids to gain weight once starting on the pump because they can eat more often. So far she doesn't seem to be eating more than she did before. She is just spreading the same amount of food out throughout the day which makes it much more enjoyable for her. We enjoyed a Starbucks sample the other day and that was so cool to be able to just give her a little bit of insulin for it. She loved that too. We also conquered our first birthday party complete with dinner, cookie & ice cream and FONDUE all at separate times which would have required separate shots. She was a little high (200s), but we got her down eventually. She sure enjoyed the freedom...that was obvious when she grabbed a handful of cheetos with giddy excitement. I wonder how long it will be before I get over the excitement of being able to feed her without a shot? I hope I always feel a bit of this excitement when we enjoy a special treat together and never forget this gift we have been given. It's not all smooth sailing; she still has diabetes; we still must fight highs and lows; she still faces complications if not under "control"; but right now this new freedom feels good.
Natalie excitedly told Eddie the other day that she ate breakfast at 9am and lunch at 1pm. That was living on the wild side for her to eat off of her schedule. It's pretty great to just be able to feed her a sandwich for lunch if we need to be somewhere and she can still snack later on. Things that we took for granted in our "old life" and seem like no big deal to others have given us back a sense of "normal"...just like everyone told us. That has been the biggest thing...a sense of normal. It is all still so new to us and I almost feel like I'm in shock still at some of the freedoms we have been given back that it truly is hard to express just how some of these things that seem little to others seem so huge to us.
What issues and fears do we have with the pod?
POD CHANGES! I have yet to do one by myself and they cause me major anxiety. I fear her crying when the cannula is inserted, hitting muscle instead of fatty tissue (because she doesn't have much), post pod change highs, the pod not sticking, the adhesive not going on smoothly, blood in the cannula, beeping pods that don't work, and other things I don't even know to be afraid of yet! The pod changes do seem to cause her some pain when it is inserted and she cries some, which is so hard. I have to remember that she was getting 5 shots a day before and sometimes she cried with the lantus shot twice a day and sometimes she cried with her arm shots at lunch as well.
Last Saturday, we had to change Natalie's pod for the first time. The pod holds up to 3 days worth of insulin. Actually the minimum it holds is less than Natalie uses in 3 days, so we end up having to throw some out and waste it. I hate that! Insulin is liquid gold to us! We are learning all the beeps that go with the pod and learned that it beeps at the 72 hour mark, but that we have an additional 8 hours until it will deactivate and we MUST change the pod. So naturally, since we were nervous, we kept putting it off. Finally we put the new one on her bottom. All seemed okay with it, in fact her blood sugars were great. An hour or so later we went to the pool with friends. A couple hours after swimming, Natalie said her pod was now on her back. It had completely come off and had moved around in her swim suit. Oh boy...panic set it. Thank goodness for Eddie, because I really didn't know what to do! We had an extra pod and insulin, but decided we needed to go home to get her clean and put the new one on. She started to cry because she didn't want to leave. She asked me if I could just give her the purple shot (long term lantus) so we could stay. We have never really had diabetes mess up our plans like it did this time, so this really ticked me off. Thankfully, we had been there a good amount of time, so it wasn't too awful that we had to leave in a rush. I wasn't really sure how long she could go without the pod and was already worrying about high blood sugars and dka (diabetic ketoacidosis). In retrospect, since she only receives .20 units of insulin an hour and she was sitting pretty at 130, she was probably okay for an hour or so. We put the new one on and she was the same blood sugar an hour later...thank goodness for the activity of swimming keeping her steady and combating any highs. She never even spiked that night. It was frustrating to have lost 100 units of insulin from the first pod though and have to put another one on so soon.
Then on Monday, 2 days into this pod, she was high all morning (300s) and despite continuing to pump her with insulin she would not budge. Ketones were negative and then I noticed a tiny drop of blood in the cannula. I freaked out. I did not want to do a pod change by myself! I decided to wait it out another hour or so and then she dropped to the 200s, so I waited a little more, and then saw that the blood was gone. Sure enough she was down to 180 and then 80 by dinner time! Now, I guess I should have changed the pod when I saw the blood because she was pretty much in the 300s all day. That was a very rough day for me. I felt so frustrated with the pod. Despite her little fingers being pricked over 20 times that day, she was quite a trooper. She wanted me to change the pod because that meant she would get to wear it on her leg. We were able to make it the full 3 days before changing it to her leg and again she is doing beautifully with it on her leg. She seems to be a leg girl for sure! She wore it with pride to her back to school POOL party yesterday with no issues at all. It is still sticking and looking good with great blood sugars. I was an absolute nervous wreck though watching her go down the slide a million times and swimming non-stop. But boy was that fun for her to have a brownie with all the kids and get her insulin without anyone noticing anything different. Tomorrow night we change back to bottom and I'm hoping this time will go better. I think we might have it a little too low. When she sits down it almost touches her seat and seems to get pushed a lot when she pushes off the edge in the pool or rolling around on the couch, etc. I really want this next one to be successful and comfortable for her. We've got another swim party this weekend so we'll be putting it to the test again!
My other main issue right now is trying to get her post breakfast spike under control. Isn't that always an issue with T1D? The Dr. had us increase her basal rate during the day to .25 an hour which is working well for lunch all the way through the rest of the day. She is consistently spiking to over 300 about 90 minutes after breakfast though. This happened on shots, but she always came back down by lunch. I have tried a temp basal increase for that amount of time, but it hasn't really helped. Right now at about 2 hours post breakfast I am correcting by about 1/2 the recommended dose. Sometimes that has her back in range by lunch but not always. So what do you all do to get rid of this breakfast spike? I thought that was one of the benefits of the pump so I want to make that work now! Do you set a temp basal after breakfast, is the basal rate set for more post breakfast, or do you correct a couple hours later?
School starts in less than 2 weeks and I really want to get the mornings under control. I feel so new to this that I don't really even know where to begin with regards to her school schedule. It's completely different without her taking lantus and what to expect with activity and changes between meals. I am SO not ready for her to go back to school. She is not used to having a carb snack mid-morning at school, but now that she is on the pump, she should be able to enjoy that. If she is 300 at that time though, I really don't want her to have a snack.
So we remain cautiously optimistic about life with the pod and look forward to it getting easier with time. It's going better than I expected. I can see why people say it is more work for the parent while on a pump. We can now tweak her insulin needs for every hour of the day, where before there were only so many changes we could make. It should all benefit her in the long run though. I anticipated really high highs because of them being cautious in the beginning, so I can handle a lot of the 200s we have seen. She has an Endo appointment next week and I am dreading the A1C.
Natalie sporting her pod on her leg and holding her very first pod. We decided it was so good to us that we needed to save it forever! (We wrote on it, "My First Pod August 1-4, 1012."
Now who wants to meet us at the ice cream shop....because we can do that without a shot now!!
To get around the post-breakfast spike, I pre-bolus Elise by up to 30 minutes. Because she used to wear the dex, I know how long it takes for her BG to start dropping in the morning. It just depends on where she starts out. Anywhere below 120 I give the insulin at least a 20 minute head start. Anything over 120, I just wait a bit longer. These days she's usually in the mid 100s about 2 hours after breakfast.
ReplyDeleteI went to a talk given by dr. Ponder (a well known endo in our area and a t1 himself), and he said that it takes insulin about 20 minutes to start working. He told us by getting his patients to pre-bolus, he was able to lower their a1c by 1-1.5 points.
I can understand being a little nervous about pre-bolusing, but this is what has worked for us
I pre-bolus for breakfast too. It's the only way I have found to "strike the spike" without going too low before lunch.
ReplyDeleteI love how excited your daughter is about pumping! The extra flexibility is awesome!
We prebolus for half of all of Isaac's meals, I only do half though because he is a particular eater sometimes he eats it all (and more) other times NADA. The other thing is, at least with the medtronic pump, we can set blood glucose ranges for different times. So at night Isaac's target range is 150-150, but during the day it is 80-120 mostly because he is often grazing throughout the day and I don't worry about him dropping as much while constantly consuming something. Another awesome feature I like about the pump is we can increase the basal when needed, like for long car trips, movies, or going to parties where there is a lot of finger food and I may not perfectly SWAG everything. OR, you can decrease the basal ahead for things like scheduled exercise or when you see the BG is steadily dropping while they're sleeping we've been able to reduce the basal and ward off having to give a sugary middle of the night snack.
ReplyDeleteI am so glad things are going well with the pod, it is great to feel so free to just enjoy and not worry as much. Have a great weekend :)
The only meal we routinely pre-bolus for is breakfast. Even if I have no idea what he is going to eat, I'll do 25 carbs right when he wakes up, because I know he'll eat at least that. then when he actually eats, I give him the rest. That has REALLY helped our breakfast spikes!
ReplyDelete1. We do not use the reverse correction
ReplyDelete2. We pre-bolus every single meal, unless he's below 100. Or if he's at school, he'll just bolus and eat.
3. Matthew has never had the dreaded breakfast spike. But never fear, we have other challenges! Mainly between 8pm and 2am.
4. Last, this may sound weird, but after about a year, I finally found a better way to pinch up while inserting the pod. Matthew is very thin (no weight gain with pumping) and he has a lot of muscle. So...I pinch up his skin and then kind of jiggle my hand to grab just skin and not muscle. I really make an effort to get "skin" and I truly think it makes a difference on the pain of insertion. Also, I think we avoid muscle. This is harder to do on his thighs, but I try. Pretty easy to do on his arms....
Thanks Tracy, We will try that with the pinching. We pinch around the cannula, but she is really thin as well. I think you need to make a video to demonstrate! :-)
DeleteThanks everyone for your suggestions! I guess I should have mentioned that we do pre-bolus every meal just about, and always breakfast even if she is 70-80. We did this on shots as well. I don't think we do it as early as everyone else though. Usually about 10 minutes before she starts eating, 20 minutes if we are lucky...she wants her food! I guess now that she is on the pod, I can start it while still in bed. She seems to be going to over 300 and not coming down at all without a correction at the post 2 hour mark. I tried for a longer time today so we will see! Keep the suggestions coming, I appreciate them!
ReplyDeleteIt sounds like you're in good hands with lots of helpful suggestions. I am so happy for you to have increased freedom as a family with the pods. Congratulations! I look forward to seeing in person when we get together :).
ReplyDeleteGlad to hear things are trucking right along! :)
ReplyDeleteWe've found that Bean not only needs a pre-bolus of about 20mins for breakfast (pretty easy to accomplish during the school year because I test/dose her when I wake her up and it takes her that long to get downstairs for breakfast!) plus a massive basal increase (like twice the amount she usually gets) for 2 hours once she starts eating. I don't program this basal increase, but opt to always do it as a temp basal, because breakfast time isn't 'set in stone' and can vary a good 15 minutes.
We do use the reverse correction feature. It's taken Bean a bit to 'trust' it when she would bolus for lunch at school and she would be below 80. There were times she didn't bolus at all (disaster!) because she was afraid it was giving her too much. But, after I explained how it works (it would give her less to help bring her up) she's bolused as usual, even if she's been in the 60s....and it's worked just fine for us!
Happy podding!!! :)
Glad to hear things are going well! It will get easier as you find what works for you.
ReplyDelete1. We do not use the reverse correction feature...but if I did, I would probably only use it if she was < 100.
2. We have never been able to just use the pod adhesive. I think my kid is really oily AND is always in water. Here's my routine: a. Clean site w/alcohol. b. Spray Cortaid on site (helps reduce itchiness and has helped reduce irritation on my kiddo) c. Blot Skin-Tac on site d. Apply pod e. Use hypafix over pod f. Using old pod as template, cut a hole in tegaderm and put it over all of the above g. Pop a leg or arm band around that bad boy (tallygear or bands4life) h. Use De-Solv-It to get it all off
3. You will know if you hit muscle because it will hurt. You will know if you hit a blood vessel because the canula will immediately fill with red blood as far as the eye can see. It will make a nice, beautiful bruise for a few days. I've managed to hit that same sweet spot twice now.
4. Omnipod changes will get faster & quicker. For a while they were a real P.I.T.A so we started a sticker chart which seemed to help. Plus we used Buzzy - both seemed to help until she didn't really need either anymore.
5. Your 90 minute post-breakfast spike sounds like an I:C adjustment rather than basal. I'd try adjusting that first before making an adjustment to the basal rate.
6. If you are ever in a situation where you can't pop on a new pod, you can give her basal via a bolus - figure out what she'd get via basal in a 2 hour block and bolus her for it. Since it takes insulin at least 2 hours to work, and since she's a nice, even 0.25 per hour, you should be able to either give her 0.25 every hour or 0.5 every 2 hours for her basal. We had to do this once and I was freaking out but it worked just fine. So glad my CDE taught me this trick! Obviously adjust for current BGs, but just know it can be done :)
6. Bootie sites are my least favorite. The curve of the toosh doesn't seem to work well with the flat pod. I cannot tell you how many times we had a cannula just pop out. I use the top of the crack as a guide and usually don't go any lower han that. However, we prefer legs & arms. No tummy yet - just not enough fat. I agree - tummy = disqualified!
We do not use the reverse correction.
ReplyDeleteWe also pre-bolus at least 30 carbs up front. It's so hard to know how much my daughter will actually eat.
And I too love that my daughter can sleep in on the weekends and I don't have to get her up for breakfast at a certain time.
I love the flexibility that the OmniPod has given us.
Your daughter is a doll and looks so excited to show off her new pump!
I don't have your email, either, so here's my answer back to your question: We've actually had more issues w/the pod facing out (away from crack) than facing in. I think the canula is actually slightly below the crack - in the fatty part and I usually angle the fat part up rather than horizontal. For some reason I had less issues this way. Also, before sticking the pod down, I would kind of back-up the adhesion on the skinny part - if that makes sense, so that there was some "give" because I found that the pod would immediately start pulling on its own adhesion at the canula end. Also, I would cut a piece of hypafix tape 2x5 inches and put it across the pod where the skinny part meets the fat part. This seemed to help keep the front part of the pod down better. Until you can get her to wear the pod in arm or leg, invest in a lot of stretchy pants!
ReplyDeleteI strive for a 30 minute breakfast pre-bolus...this usually means I go to her room first thing to test and dose...then putz around, getting breakfast on the table while she gets dressed. On the weekends, I let her sleep to her heart's content -- which usually means we're still getting up around the same time :(
ReplyDeleteWe had some site issues when she was using the Cleos 5 yrs ago with her 1st pump, but nothing significant since she started wearing the Insets a few months later. Hope you get lots of great suggestions and things keep getting better!!!