Tuesday, August 28, 2012

Podding - It's Complicated

For those on Facebook, I'm sure you've seen the description "It's Complicated" as a relationship status.  Well that is exactly how I feel about that little life saving device that has been attached to my daughter for the last month.  It is a true love/hate relationship we've had the last couple of weeks!  Most of the time, I love it, but we have had our share of issues and that is when I really want to throw it out the window. 

Besides all the issues, Natalie still says she will NEVER go back to shots. She has been quite a trooper and the pod changes are getting quicker and easier. A couple times now she has not cried and said, "That didn't even hurt!" My anxiety over pod changes is lessening with each one. We have attended several parties since being on the pod and not only is it much more enjoyable for her, but it has made parties much more fun and less stressful for me. It is so awesome to just give her insulin with the touch of a button each time she eats something and not worry about the timing of it all. She was able to sit at the table with all the other kids while I gave her insulin. She didn't have to go off to the side for a shot. She said, "Parties are just so easy with my pod now!"

Scientist Natalie partying with the pod:



When the pod is working great, we are really just enjoying a sense of "normal" again that we haven't had for 2 years. Dinner time is less stressful because there is no rush to do shots on time and have dinner ready early enough for her. Mornings before school are less rushed without shots to prepare. The times that the pod is working well and things are going smoothly do make up for any issues.

Natalie still amazes me with the depth of her understanding of the reality of life with diabetes.  The other night, as I dried her off from the shower, she said, "I am going to wear the pod every day for the rest of my life, until the day I die! Then when I go to heaven I won't need it anymore because I won't have diabetes. It will be so great! I just know I am going to heaven. Do you know you are going to heaven?"

Thanks to everyone for your advice and encouragement on my last post.  Just go back and read all the detailed comments to see that the DOC (diabetes online community) is pretty awesome!

Now for the issues:
We are still having trouble with the pod sticking for the full three days when it is on her bottom.  We have had great success and fabulous blood sugars when she wears it on her leg, but we really need to keep rotating.  We are still dealing with some scar tissue build up on her legs from the shots, so need to give them a break as much as possible.  She LOVES wearing it on her leg!  A couple weeks ago we put her pod on her bottom on a Friday night.  She started out with great blood sugars and all was great on Saturday until I checked her after dinner and she was over 300.  That was odd, because normally at bedtime she trends low, plus dinner was pretty low carb and she didn't even have a dessert or snack.  I checked the pod and there was some blood around the cannula, but not in it, so I bolused and we put her to bed.  She stayed in the 200s with continuous pumping of insulin and finally came down to 129 by 2am, 111 at 4am, but crept back up to 219 at 8am.

 I should have checked her pod before she ate breakfast.  She ate breakfast as usual, I pre-bolused and set a temp basal to try and avoid the post breakfast spike and we all rushed to get ready for church.  As I got her dressed I saw the pod was starting to get loose around the cannula side (our usual problem).  The adhesive starts to detach from the pod right by the cannula.  I thought maybe I could put some me-fix tape over it and get a little more time out of it.  As I looked closer though, I could see the cannula was not even in her skin!  Panic set in...she had just eaten 30 carbs for breakfast and now I did not even know if she received any of the insulin and at the worst time of the day for blood sugars.  I told Eddie there was no waiting to change the pod, it had to be done now.  I went into rush mode and boy did I have that pod filled with insulin and her leg swabbed for a new pod in no time!  I guess I really can get the job done when under pressure.  I slapped that new pod on her leg so fast, checked her sugar, set a temp basal increase, grabbed all her diabetes supplies, threw my hair in a ponytail and we were off to church.  Church starts a half hour later for the summer and we arrived even a half hour later than that, which I'd say is pretty good considering the circumstances.  I checked her in the car and bolused as the PDM suggested.  Her pod beeped in church with the end of the first temp basal and then again with the start of a new one.  Poor girl, already the beeping is annoying to her.  I couldn't even concentrate in church, because all I could think about was how high her sugar was going.  The highest we saw was 389. 

Then at the end of the sermon our Pastor started talking about having joy in the suffering.  I could not keep the tears in, I was feeling so overwhelmed and fearful that morning.  He talked about someone he knew who fought chronic fatigue and then cancer later on in life and was always joyful.  It reminded me of my dad who fought cancer for years.  I think of him often while we are living this life with diabetes.  He always had a good attitude and never questioned God.  I find it really hard to have joy in the suffering though when it is my child's health that is suffering, not mine, and I fear for her future.  I cried as we received communion and they prayed over our kids.  It was an emotional morning.  The rest of the day improved and her blood sugar was only 70 post lunch which was actually good to see and know the new pod was working!  The pod lasted the full 3 days (because it was on her leg!).  THEN...it was time to put it on her bottom again.

Here is a picture of the pod after we removed it on Sunday morning.  Notice how the adhesive is separated from the pod.  The cannula was also bent and kinked and yes that is blood too.



The pod lasted just 2 days the next time as well. It worked great for a couple days and then she started having a lot of highs (300s) at bedtime and would not budge.  I really hated to change it at bedtime but we were not having any luck getting her sugars down and I didn't want a repeat of the previous weekend.  So we changed it to the other side of her bottom (she was not happy about that) but I really wanted to try again with it there and then the timing would hopefully work so she could have it on her leg for the first couple days of school.  I placed it on the highest part of her bottom with the cannula facing to the outside.  She really cried and said it was uncomfortable, but it looked the best and highest we had done.  I had high hopes for this pod.  She initially dropped to the 200s so I assumed it was working, then she spiked to low 300s where she pretty much stayed most of the night despite my continuing to pump insulin all night.  She climbed in bed with us Saturday morning and when I checked and she was still 300, I checked her ketones and they were 1.5.  YIKES...that scared the heck out of me.  We got a shot ready and I figured out how much to give her, but also called the on call Dr. because that is what we are supposed to do when she has moderate or larger amount of ketones.  Natalie's Dr. was on call and he confirmed the amount of insulin she needed.  He also said to change the pod.  While it was obvious it was not working, I still hated to change it AGAIN.  Natalie asked if she could have it on her leg and that is where it went! 

It took all morning for the ketones to clear, but they decreased quicker than I anticipated.  Natalie drank 3 cups of crystal light to help flush out the ketones.  She was acting fine until she said her tummy hurt and she threw up all 3 cups of crystal light.  I have never seen so much throw up.  It covered the entire floor area the length of the couch.  I didn't know if that was from the ketones or so much crystal light, but I started to wonder if we were going to have to make a trip to the ER.  She was horrified and look scared because she had never thrown up before.  She covered her mouth and said, "oh what was that?"  She was pitiful.  Then she kept saying all morning, "I think that is called barfing.  I barfed.  I've never barfed before."  I myself was feeling quite nauseous and anxious due to the ketone scare, so every time she said the word "barf" well it made me want to do just that!  She never had ketones while on shots even when she was sick or had high blood sugars.  I really loved the lantus she took which kept the ketones away.  We didn't let her eat anything with carbs until the ketones were gone.  Did I mention that Jacob had a friend spending the night and Eddie made choc chip waffles?  She was so patient and never got upset about having to wait.  So we were trying to be a normal family in front of Jacob's friend, but 2 unplanned pod changes, syringes, multiple meters, and test strips on the table is anything but normal!  Then he said "oh my sister barfs all the time."  Well, he fits right in with us then!   I still can't figure out what was wrong with that pod. There was no blood in or around the cannula and it wasn't bent. It was high enough where there was no scar tissue. It looked great. 

I am happy to report that since those incidents we have had a successful pod on on her bottom that lasted the whole 3 days!  I put it on a Thursday afternoon, which was perfect timing so she only had one day at school with it there.  I did put a strip of mefix tape on top of this one and that seemed to help keep it somewhat more stable.  On Friday I found her jumping backwards with full force and landing on her bottom on the ottoman.  Hmmm.....do you think that might be causing it to come loose??  Crazy girl!  Then on Saturday she attended two birthday parties and she had great blood sugars for all the party treats.  Another party on Sunday, including swimming.  I told her to swim all she wanted because once we went home it would be time to change the pod.  It stayed on the whole time and I let her take a nice long bath.  All the water definitely loosened it up but I decided to give her dinner and bolus with that pod before changing.  Well AGAIN...once I changed it that pod was REALLY loose and not sure if she received her dinner bolus.  New pod went on her leg and she was in the high 200s/low 300's until 4am.  I did not sleep much at all that night.  I checked ketones at 2am and they were already up to .6.  The pod did eventually kick in though and she was 98 by morning.  I've been doing an increased temp basal with pod changes, but except for this instance, she generally is having great blood sugars after we change the pod.

I'm finding it hard to figure out the right time to change a pod around her bath and bed time.  I don't want to do it right before a bath and risk it coming off in the water, but after a bath tends to be too late at night and I want to make sure her skin is good and dry.  If we change it at bed time then we are checking all night to ensure it is working.  Then there is the timing around school.  I have it set to alarm one hour before expiration (there is then an 8 hour grace period, but it will beep every hour).  If she were home and was having good blood sugars I wouldn't change it until we were in the grace hour period.  Now at school I don't want it beeping every hour so we might have to change it the night before.  It is taking more planning than I anticipated to figure the right timing of all this!

11 comments:

  1. I've never podded so I don't have any advice for that part, BUT a small amount of carbs (crackers, toast, etc) can actually help in the process of getting rid of ketones.

    I am not sure on the exact science of why but hopefully someone else can chime in on that.

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  2. For all the issues, we, too wouldn't trade the pod for anything!

    We've found that Bean needs a unit of 'extra' insulin with a new pod to keep her from running high.

    I tend to like the 'before dinner' pod change the best. That way it doesn't beep at her at school that it's going to expire. And I can keep an eye on her BGs for several hours before my bedtime to make sure she's doing OK and can make corrections one way or the other.

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  3. We have never podded, but we have used Minimed sensor which really needs to be taped down. We used Skin Tac (also use ST for Dexcom sensor) and put IV 3000 dressing carefully over it. I would definitely try to tape down the pod in some fashion, and I believe it should work well because you do not disconnect to bathe or swim with the pod. I have seen kids wear the pods on their arms with bands around them. Pumppacks sells the arm bands that go over the pods, as I am sure many of the other companies that make pump pouches will have them. Highs from interruption in the flow of insulin come with the territory for all pumps. We use Apidra insulin and sometimes it just does not last in the pump beyond 2.5 days. Sometimes sites just stop working.... and, as you noticed, the site can look good. It is frustrating but beats five shots a day, that's for sure. Before dinner is the best time to change a site, I agree. When our DD was under ten years, we had to temp basal up 20 percent a few hours after site change. When she got older, she did not get high from site changes.... they are using such small amounts for basals when young. You sound like you are doing really well and you have gotten the hang of it. Just don't expect perfection..... but I think you can expect an improvement in the overall A1c, despite the weird highs sometimes.

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  4. Ugh - send me your email address and I will send you a photo of our pod adhesion - it's seriously ridiculous but it works! Will she wear it on her arm? We rotate arm/legs for pods and use bootie for Dexcom. diabellaella@gmail.com.

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  5. Yay! So glad Natalie is loving the pod, despite its issues. Adam feels the exact same way. And we have that same problem with the adhesive pulling away from the pod like in your picture. So annoying. I use Skin Tac first, then place the pod and THEN I put a strip of Hypafix tape over it and that will usually make it last the whole 3 days. For some reason this last batch of pods is doing this and before we weren't having this problem.

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  6. Never podded before but use Animas pump and Dexcom and use Skin Tack on both. Love it puts a nice sticky barrier between the skin and the adhesive that helps it stick on better and then for Dex I also use tagaderm so it will last the full 7 days. Skin Tack you will probably have to order but Tegaderm is available at most pharmacies. For the Dex I usually wipe the area with alcohol swab then with the Skin Tack then I wipe the back of the Dex that is going to stick to me with skin tack and then stick it on. I then cut a hole in the Tegaderm for the transmitter to go through and then stick that on. Now I don't know what insulin you use but both Apidra and Humalog say that they can only last about 48 hours in a pump b/c both are really temperature sensitive. Novolog is less finicky. And have you tried putting the pod on her tummy or arms?

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  7. I've been using OmniPod for almost a year now, and I swear by the combination of Skin Tac under the pod, then a strip of Hypafix tape (I order it from Amazon) over it. The Hypafix is great on all the sites I use- arm, leg, bottom, and tummy.

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  8. alright, first of all, that was a long post - you amaze me! And second...that kid cracks me up "my sister barfs all the time!" What an easy going friend. So...for all the other issues, I think falls into the category of sometimes you just don't know. We had a lot of trouble at first when Isaac started pumping, then things started smoothing out. We figured that some of the trouble for him was the wipes we were using in terms of keeping his skin moisturized enough to not have adhesive issues, so no more wipes we just do the sites after baths and know the skin is clean. If he needs an "emergency" site change I just wipe down the spot with a clean wash cloth and move on, as for tapes we have them all - again his skin is sensitive so we rotate what we use to keep the site on properly. Tegaderm, IV 3000, and believe it or not but the waterproof bandaids with characters on them are our favorite :)
    Oh, and with ketones we were told it is okay to eat if they're also drinking a lot, but not to be active at all. So, on the rare occasion Isaac's developed ketones it usually happens in the AM and is caused by a bubble in the tubing...so we increase his basal for two hours, give correction plus 25% extra and let him eat all while really encouraging him to drink more fluids. This seems to work for him and within a few hours he's back down BG wise and ketones have cleared.
    I hope things are going smoother and that school year is off to a wonderful start. Oh, I was wondering, too how the staff is feeling about her podding? Have any of them had experience with it before or have they stated how easy it is for them to use it with her at school? We've been thinking about switching Isaac to the pod before he starts K in a year, I'd love to hear what they think.

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  9. so happy that you all are loving the pod aside from the annoying issues you said! I just wanted to say that it brought tears to my eyes to read what she said about loving it and wearing it until she gets to Heaven....sweetheart!! <3 You are one amazing Momma with such a special little girl!

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  10. My husband had had the pod for a few years now. He is in construction so we had to figure out how to keep it on if he sweats too much while working outside. Ended up using an adhesive that is for patients with a colostomy bag. It works amazing!!!

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  11. My husband had had the pod for a few years now. He is in construction so we had to figure out how to keep it on if he sweats too much while working outside. Ended up using an adhesive that is for patients with a colostomy bag. It works amazing!!!

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