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It’s been too long September 16, 2009

Posted by aydensmom in diabetes, insulin pump, Minimed, Uncategorized.
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I know, it has been too long since my last post. But I’ve been so overwhelmed with the support messages I received that I wasn’t sure what to write about next. Thank you to everyone who sent their thoughts and support to me. It is so nice to know you all are enjoying this blog!

Yesterday, we celebrated our four week anniversary on the insulin pump. Ayden got to have a special treat – the ice cream truck came around, so he went for a run with his dad to catch it, and he had his first rocket popsicle.

nutrition_popsicle_firecracker

They're called rocket popcicles where I come from

I think he ended up with most of it on his face and shirt, but he seemed to enjoy it.

For about a week now, we have been using the pump to its fullest. This has meant that Ayden can eat as much as he likes, and has also been able to have dessert with us after dinner.

The changes we have seen have been very positive. we haven’t seen a number over 14 mmol/l in two weeks, which is a first since he was diagnosed.

He has also been able to eat as much as he likes at supper. The first time we let him eat until he was full he was quite confused and kept looking to me to stop him from having another french fry. When he was full he didn’t say so, he just got down from the table and started playing, but kept watching me and waiting for the inevitable, “you have to come back and finish what’s on your plate”. I didn’t have to say this though, because we only bolused him for the minimal amount of carbs he was going to eat and then we gave him an extra bolus after he finished to account for the exact amount he ate. His levels stayed in range the whole time.

We have only had one really scary moment. Ayden’s levels dropped at night from some unexpected activity. He was only down to 3.8 (anything under four is treated as a low), but he was not thinking quite right. He wouldn’t let me touch him, and I had to force a finger poke on him to find out what was going on. He also didn’t want anything to do with the apple juice he needed to drink to bring his levels up. He was only asking for medicine and thankfully his dad thought to put the juice in a medicine dropper to get him to drink it. Once he had a few sips he started to come around, but it was the first time I seriously thought I might have to use glucagon on him.

Overall, I’m extremely happy with the pump. Little pleasures like being able to tell Ayden he can have ice cream and dessert and let him go and play when he says he’s full are realities for me. Thank heavens!!!!

Worst experiances September 1, 2009

Posted by aydensmom in diabetes, insulin pump, Minimed.
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I’m interested to know what your worst experience has been since being diagnosed – something outside the normal high and low experiences.

Mine has been dealing with my backup pharmacy. We only have this one in place in case our normal pharmacy is out of supplies or we need something later in the evening. But, after yesterday, I’m re-evaluating this need and looking for other options.

I have to say that we have been going to the pharmacy for a year, and each time I go in it’s a fight about something. In fact, the first time I went in, the technician was so clueless about my needs or the needs of a type 1 diabetic that he forced me into getting supplies I didn’t need and then made me feel stupid for not knowing what I needed (Ayden was diagnosed two-days prior to that incident). It was a harsh lesson, but one that taught me about having to be the expert and not relaying on the expertise of someone else.

Then yesterday it was again emphasised to me how inept this pharmacy is.

We live in a small town so it is even more surprising to me that we get great service and awareness about his new insulin pump – a technology that is fairly new – than we did when we went into the Shopper’s Drug Mart.

Yesterday, I went in for some supplies and to get his insertions and reservoirs on order. I was there for 45 minutes and for each item I was discussing I had to argue and justify my need for it. First they tried to tell me they couldn’t order his pump supplies, which I was previously told they could. Second, they tried to sell me tegaderm that wouldn’t even fit on Ayden’s leg it was so big (after I gave a prescription for the size I needed). Third, they argued with me regarding my need for a vial of insulin and told me we would be wasting too much and that we should continue using pen-fills. If you have ever tried to draw up a reservoir with a pen-fill, you’ll know why I was needing a vial – pen-fills are pressurized and getting the air out of the reservoir and filling it from a pen-fill is very hard. Doing it this way cost me a night of sleep our first week on the pump, as his levels would not come down. Most likely because there was still air in the reservoir and tubing. Fourth and last, we have switched to a Contour meter which live-links to our Medtronic pump and they told me I couldn’t get strips with out a prescription for them. It took me about 20 minutes to convince them that I had a prescription with them, hence the ability to get insulin, and that I still needed the Precision Xtra ketone strips. The technician even tried to tell me I had a prescription for Precision Xtra ketone strips but not glucose strips.

Does anyone know if there is a place you can formally complain about a pharmacy such as a professional organization? I just hate the thought that any parent with a newly diagnosed child would have to go through what I went and have gone through with this pharmacy.

On the flip side though, I have to commend the fantastic people we deal with at our local pharmacy and I want to recognize the special effort that they go to each time we go in.

Day three – insulin pump August 27, 2009

Posted by aydensmom in diabetes, insulin pump, Minimed, Uncategorized.
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Wow, it has been an exciting few days. Ayden is officially wearing his insulin pump, and he seems to really be enjoying it.

However I’m noticing he seems to be tired these days, and I have a feeling he’s not sleeping well because it’s attached to him. I can’t put it under his pillow thhough because he moves around too much during the night. Anyone have any other suggestions?

The main quesiton I have been getting from people (even our pharmacist) is “what is an insulin pump?” So for anyone out there  who is confused, it is a device about the size of a pager that delivers insulin to him through an IV type of insertion. This allows Ayden to get a constant dose of insulin throughout the day to match his body’s minimal requirements. The overall purpose of it is to better control your numbers by taking him off of long acting insulin which can act irratically.

Because of the features of the pump it also allows us to be more flexible in when and what Ayden eats as you can deliver extra insulin to him to balance the food that he’s eating.

Because of the features of a pump and the way that it operates we are essenitally learning a new way of managing Ayden’s diabetes. And it is as intensive, if not more so, than when he was first diagnosed. We started the first of our official training on August 25. And I have to say, this session did not go very well. 

First off, the team at the Stollery has done a fantastic job creating this pumping program, and I feel very fortunate to be a part of it. But it has been my experiance since Ayden got diagnosed that many of the programs, services and best practices that are developed are geared towards older kids with diabetes. This means that parents of younger diabetics are given the same information and treated the same, even though they have different restrictions or needs.

The first day did not go well, because my husband and I were trying to learn about how to manage Ayden’s diabetes this new way while trying to entertain a very active two-and-a-hlaf year old in an auditorium. this meant neither of us learned a thing.

The second day we brough my parents to help us with Ayden, and they spent the first 10 minutes in the class and then the next three hours wondering around the hospital. This worked out as Ayden was entertained and they could check in on eany numbers and get advice on what needed to be done.

we have a the third session next week at night, and we are not bringing Ayden, we can make any needed adjsutments to his pump when we get home that night.

There was also a course last week about how to use and insert the pump. Ayden did not have to be at this one either and it meant Phil had to chase him around the whole time and I had to teach him as much as I could the next day.  

I have to encourage anyone who is raising a diabetic toddler to push for what you need as a parent that enables you to take part in these programs and services. After going through the first two sessions, I can tell you your child does not have to be with you at all times for the classes. 

I completly understand that there are restictions on room sizes and how many people can take part in a course, but flexibility for a parent of a toddler is imparitive. Even if the room size couldn’t accomodate extra people to whatch the toddlers, just know that they can be available outside of the room, as your child does not have to be with you the whole time.

I really enjoyed the opportunity to connect with other parents of diabetics, and I really appreciated the kids that came up to me after the class to give me advice from their perspective. It meant a lot to me to hear from them, and see it through their eyes.

We’re back – and we’re training August 19, 2009

Posted by aydensmom in insulin pump, Uncategorized, Vacation.
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It was an exhausting vacation but in a good way.

Ayden learned to ride his tricycle and had a fantastic time playing with his cousins. He had some sore fingers by the end of the trip though because we were testing him on average between 8 to 10 times a day and throughout the night. He consistently ran high during the day from sugar dumps due to his extra activity but he would drop significantly at night.

Hopefully we’ll see some of the fluctuations decrease when he goes on the pump.

We had our first training session last night and it was great. However, they asked Ayden to be there. Phil spent the whole night watching and entertaining him and didn’t get to participate in the course. 

My advice for anyone with a toddler going through pump training, don’t take your child to the first session. Phil and I practiced insertions on each other so we wouldn’t have to practice on Ayden and tonight I’ll be going over as much of the course as I can remember for Phil. I guess this will help me understand more in the end.

At this point, I’m feeling a bit overwhelmed. I’m not sure if it’s because we just got back from vacation and didn’t have much time to relax or if it’s because I want to understand the pump inside and out before I put it on Ayden. Either way, I’m trying to be patient and remember we still have two courses to go through.

One thing I’m really looking forward to though is being able to feed Ayden when he wants something. That was the most difficult thing I saw on our vacation. Ayden would stare at his cousins when they were eating something like ice cream . He would never ask for it but you could see in his eyes how much he wanted it.  It would just about make me cry every time. I can’t wait to be able to give it to him!!!

I’ll post pictures of our vacation tomorrow.

Never too young for an insulin pump August 5, 2009

Posted by aydensmom in diabetes, insulin pump.
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On August 24, 0008, Ayden was diagnosed and and August 25, 2009, Ayden will go on an insulin pump.

This first year learning to live with diabetes has had its ups and its downs. One of the most significant ups we had was attending the Kids n’ Us conference in 2009. If you are the parent or grandparent of a diabetic child, I highly recommend attending the 2010 conference. I learned so much from the speakers and sessions I took including how an insulin pump can benefit Ayden.

After attending this confernce and finding out that not only can a two-year-old wear a pump, but it is encouraged as a better way to reach his target levels, we started working through the pump process.

It has taken six months to get to this point, but I think the six month wait is necessary. There is a lot of preparation that needs to be done before Ayden officially goes on it – including a three-day trial (it is inserted and he wears it but there isn’t insulin running through it) and researching and buying the pump that is right for him (it was nice not to have to rush through this and learn about all our options).

We have decided to go with the Medtronic Minimed pump. So far our experience with this pump and the Medtronic representatives has been very positive.

The only thing that concerns me about this whole process is I heard only 32 families can be trained a year (I’m not sure if this is Alberta or Edmonton and area only). This does not seem appropriate in comparison to the number of families that are diagnosed each year.

I have heard nothing but positive things about what a pump can do for a diabetic, and I think there should be more opportunities for families to  get involved in the process and learn about this device.