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!!