Today marks one year that Marcus has been pumping and it is also his last day of Grade Three. It has been one heck of a diacoaster ride this past year.
I remember the pump training so vividly that I felt like he was diagnosed all over again. No one told me that when he was diagnosed that I would have MORE learning to do. Who knew that his zero carb cucumber while on injections actually means eight carbs when on the pump.
When we first started doing pump research we thought for sure that we were going to choose Omni Pod however, I ultimately went with Medtronic for the fact that Marcus can’t lose the PDM device and at the time, it was the only pump that allowed a CGM to connect with it on the Canadian market.
The first few weeks were fantastic with Marcus when he was pumping. We would get sites that would last almost a week and it was a dream to have my son back to the way he was before diagnosis, happy and care-free. Unfortunately, that was too good to be true.
He hit a growth spurt and his numbers went all out of control and developed a major attitude, sites last 2-3 days now and the attitude is still here most days. I am not sure that it is just his age that is causing it or if it is his numbers and how quickly they can fluctuate. Honestly, it scares me sometimes. I am scared because we have the CGM but have not been trained on it and he has had some major lows that we caught since he started pumping. Despite the fact that we have the technology sitting in our house, the sensors have expired and the hospital can’t seem to fit us in for CGM training despite multiple requests.
The day we started pump training I ordered the CGM and sensors and brought it to our one week post pump check-up where the nurse suggested we learn the pump first which I agreed with 100% at the time however, we have yet to be trained on it. One year later, we are still waiting and since school is out I will be insisting that we be trained when we attend our next appointment. It is not only my piece of mind at stake here; it is also my child’s life.
We have had trouble getting his ratios and basal settings just right. It seems like we are changing them every few weeks now since he has seemed to stop this most recent growth spurt. Sometimes, I wonder if it is even worth it for him to be pumping. It doesn’t seem to be helping him or his A1c much and all it does is cause me more stress when I have to fight with him to have a new site put on.
I wish there were days that we could get a break from diabetes. I still wish, two and a half years later, that diabetes is just a bad dream when I fall asleep at night and that it won’t exist in the morning when I wake up. I know, I am dreaming.
D-Camp is fast approaching and I take comfort in knowing that he has 13 days of normalcy with other kids with Type 1. Seems like diabetes camp once a year is not enough for the burnt out parents.
Any person who lives with diabetes of any kind knows that there is a certain juggling act that is relevant in each of our day-to-day lives. Parents who have a child or more than one child with T1D have more juggling to do. We have to juggle between sports, meals, school and diabetes. Much of our lives is spent balancing on the rope hoping not to fall.
My specific issue with diabetes is that it takes up most of my free time. If not all of my free time. It is the first thing I think about when I wake up and the last thing I think about before bed. Those two times of day should be occupied by thoughts of Ty and I enjoying childless time sitting on a dock (sans mosquitoes or flies….as he calls them – silly Newfie) enjoying some beverages.
Lately I am having a difficult time keeping up with diabetes. I know that managing diabetes effectively is hard and it is more difficult when I have a tiny human screaming when she is hungry. Oddly enough, since I have been pregnant this blog and most of the diabetes world has fallen by the wayside and it makes me sad. I miss the weekly DSMA chats but attend when I can, even though it isn’t weekly.
Since the birth of Link, both boys seems to have reverted from being eight year old boys to acting like they are two and utterly helpless. Marcus “forgets” about diabetes and eats like a horse (eating more than 100g CHO at a meal) and sometimes sneaking food which he ALWAYS gets caught because he forgets to bolus for the food he sneaks. His moodiness has gotten so much worse since the baby. He stomps more, slams, hits and kicks things when I have to tend to the baby first, a screaming hungry baby comes before saying yes or no to a 1g hot dog. CJ now has issues with injecting himself at meal times after a year of no issues, it is only now after the baby. He has fits that sometimes last 10-20 minutes because it hurts before the needle even touches him. Meanwhile, during those fits, begs his dad to do it for him. Both boys however, seem to have forgotten where the sharps container and all the diabetes supplies are kept and just pile the used syringes and infusion sets wherever they see an empty space. Oh, not to mention they use the same lancet about 100 gazillion times before they remember they have to change it.
I am so burnt out right now and it isn’t just diabetes related. You know that feeling you have in the bottom of your stomach or the top of your throat when you are about to fall but saved yourself? I feel like that every day lately and I am about to fall at any second. I don’t even check Marcus’ numbers when he gets home from school. I just don’t care anymore. Don’t get me wrong I care about the health and well being of my child but I am just happy enough to have him be alive when he gets home from school. Although, with his attitude most days, I wish he stayed at school. I now see why boarding school is so appealing to rich families. We check at meal times, correct and keep moving forward because let’s face it, diabetes is a 24/7 365 job and parents have it bad when there is more than one kid with this disease living in the house. I am not sure how much more balancing I can do. Balancing sports, meals, school, diabetes, two 8 year olds and a baby. I have an amazing supportive partner in Ty but sometimes, I just need time to myself away from kids, diabetes and responsibilities.
Who’s in for some adult beverages by a lake for a few days?
In our house we love the Accu-Chek mobile blood glucose meters however, the current generation doesn’t live up the expectations that we had set after living with the previous generation for almost two years.
The main differences between the meters are the size (thickness), weight, the ability to not lose a test as quick as the previous generation and the way in which you download the information.
The current generation is thinner and lighter and a touch longer than the other one. Our boys loved having the new one at first however, the cons quickly presented themselves.
The leather-like case from the previous generation was replaced by a flip case similar to a cell phone case you wear on your belt. Not useful for children at school. The lancing device attached to the meter no longer primes first and has a tendency to malfunction and no longer work. We have gone through 3 since November and we never needed to replace any with the previous model. Luckily, the fast click lancing device from last generation fits on the current model of meter but not perfectly. But, we manage.
The screen seems to be more sensitive and we have cracks around the centre menu button. These weren’t built as durable as the other ones. If you take into consideration the amount of use that each meter gets with two eight year old boys checking their blood sugar anywhere from 4-12 times a day, this new generation needs to be redesigned.
Despite the fact that we love the ease of use of these meters, I think we will switch back to our more reliable and durable previous generation until they can get this generation correct or introduce a newer generation that fixes all of these issues. I guess newer isn’t always better.
**Disclaimer: We received two Accu-Chek mobile meters. The thoughts and opinions located herein are my own and we have received no compensation for my opinion.**
Well, we are back. We haven’t gone anywhere but we took a much needed break from blogging and general updates for everything diabetes related except for updating to Twitter/FaceBook and attending the odd DSMA chat.
Despite taking a 4 month long hiatus from blogging, we have been really busy in our household.
School started in September and it was a rough starting with the pump because dear ol’ me tightened the battery casing too tight on the first day of school and gave Marcus a connection error and wouldn’t operate. Oops.
A few pump sites have been ripped out because of door handles. OUCH! Of course, they happen at school with the exception of one at home during Thanksgiving dinner.
Also, in September Marcus has his first A1c test since pumping and went down from 8.8 to 8.0 Wahoo! However, since we have been having issues trying to diagnose the issues with him being high lately (we think growth spurt) his A1c last Friday (the 13th) was back up to 8.8. Crap!
While we were in clinic on Friday (the LONGEST clinic time we have ever had since DX) our CDE tried out the SureT infusion set on Marcus and so far after 2 set, it hasn’t worked. He had one number in range since the new set went on and the rest were between 18-25 (324-450).
Pawel, Marcus’ dad, put a new sent on him Saturday afternoon hoping that it would work but after 2 hours of the new set Marcus shot up to 32 (576) Fuck!
When he came home to me Sunday afternoon I gave him a manual injection of 3 units of Nova Rapid to help bring him down. It slowly worked and when Marcus wanted lunch I got him to calculate what it would be using the Bolus Wizard and gave him a manual injection. He went down to 4.5 (81) which was fantastic.
At dinner he was still in range and I wasn’t sure if it was because of the site or the manual injection so I decided to wait until bedtime but he decided he wanted to go out and play in the snow as Ty was snow blowing the driveway. At bedtime, he was in range again. Fantastic but again, I want’ sure if it was the pump or injections.
I decided to leave it until morning and he woke with 16 (288) on Monday so I gave him a site change and e-mailed the hospital.
The hospital and I have been emailing back and forth all week and we have made so many changes to Marcus’ pump that it took two days for me to fully implement the changes. He has still been waking up high despite going to bed with a decent almost in range number before snack. We are also STILL having an issue with him being super high for his morning snack at 9am. Sadly though we will have to just play it by ear until Christmas break is over and wait until we get back into our routine again to see what really needs to change. It is difficult to figure out a proper management plan when the last week of school is all messed up with Christmas concerts and junk food.
We Marcus started pumping on June 26 (with saline and also his last day of Grade 2) and on July 3 (with Nova Rapid). I was more nervous than I thought I would be when we went live with insulin. I knew then that the pump would help us a lot but I had no idea how quickly Pumppy (what Marcus calls his pump) would be loved by myself or Marcus.
Looking back to a few months ago we didn’t even know which pump we were going to go with. We finally decided that we were going with Medtronic over the Omnipod for two main reasons. One, if Marcus lost the PDM for the Omnipod while at school we would be up the creek without a paddle and two, Omnipod doesn’t have CGM – YET.
Marcus had said at one point that if he can’t have the Omnipod that he doesn’t want a pump. Tough luck! As much as his dad I try to include him in every important decision to do with his diabetes, we had give him no choice in the matter. This time.
The reason why we went with Medtronic is purely for the CGM. I really like the tubeless option that Omnipod offers, which is especially beneficial for a kid who moves as much as Marcus does but the tube doesn’t seem to bother him since he is on the 18’ tubing.
Marcus had some really bad highs in the past few months before he started pumping and at his last endo appointment his A1c went up .2% to 8.8 which is much better than I anticipated. We wanted the CGM for Marcus so we can better understand what is going on between his BG checks and hopefully pretty soon we can have better control. We are starting the CGM sometime after vacation and have yet to set a training date for it.
Not even a week after the hospital let us have control of our kid again, we forgot to bolus for lunch. Luckily, we caught it at the 2 pm BG check and we corrected it but I had a minor freak out in my head about what happens if he forgets to bolus while at school for lunch? Oh, boy I need to have a whole sheet for his agenda each week with the carb amount he is having for lunch and for each snack so he knows what he needs to bolus for.
When we started to pump, Marcus was skeptical about the pump because he didn’t want his lifestyle to change again like it did after DX but really; it has changed for the better. We have everything (when we can) weighed out and the carb ratios that we have on a sheet that we keep in the kitchen for the most eaten things. It is fantastic!
It is so fantastic that we have started doing the carb ratios and weighing CJ’s food too (CJ is Ty’s son who was DXed May 19th). CJ is still on injections but it doesn’t hurt to get a head start. Having the ratios really helps us with better blood sugar control for both boys and I wonder why they didn’t teach us when Marcus was first diagnosed. They taught us to count the carbs on the boxes of prepared foods and to get as close as we could to the recommended carbs on the Canada Food Guide that was set out just after DX by the dietician. Not much more than that.
Don’t get me wrong, counting carbs using ratios can be a pain in the behind especially when eating out and using the restaurants nutrition information and we figure out the factor based on their numbers and work out the “exact” carbs for dinner only to have both boys high in their 20’s (360-ish) later that night before bed. Boy, oh, boy does that ever mess me up with that momentary shock of “Why the heck are you so high?” Especially since he is on the pump but we haven’t figured out the dual wave bolus for things like pizza yet. I think I will have some reading while he’s at camp.
There have been a few sites that have been set improperly and it sucks because pump supplies are SOOOOOOOOOO freaking expensive. Even with insurance. I need to set up auto refill because I don’t like running low.
Just before leaving for camp/vacation we had only four infusion sets left for 10 days. Normally that is okay but for 10 days at camp and in the car traveling, I am not sure how many we would actually need just incase something happens. As it turns out Marcus needed a site change today because his site is falling off. We have yet to use liquid band-aid or other added adhesives to keep his sites on because they usually start falling off around day 6 and that is okay with us as we won’t go past day 7.
The one thing we need, need, need to remember is that when we check his blood sugar after a site change two hours later and if it is okay, we need to remove the old site. We have a bad habit of forgetting it for a day or two because Marcus won’t tell us that it is on. I don’t want to think about the infections that he could get by keeping a site on too long, especially if it isn’t capped off to prevent dust and stuff entering the through the cannula. Not sure if that happens often or not but I picture red swollen pimple like spot on his butt.
All in all, the switch to the pump was much better received by Marcus that I though it would be. I am so pleased that we made the switch to pumping although when switching back to preparing the insulin mix for CJ I have to stop and think about how to mix it now. Which isn’t a bad thing, right? How can taking your time to think about insulin dosages be a bad thing?
We are still here. I promise.
Things at home have been extremely busy and I am reminded daily of those people who are busier than I am who still manage to find time to blog. Good on ya!
I am typing this just after dropping Marcus off at camp for 5 days.
There are a few blog posts that I have bee trying to get out for over a month and I can’t seem to find the time to get them out. They keep repeating themselves in my brain reminding me that I need to get them typed out but I still can‘t seem to get them out.
There are a few blog posts that will be coming and I swear I will get them all out – eventually.
The first will be about our first month with Marcus on the insulin pump. Check this update RIGHT after this goes up because, I managed to get the post written and put into draft before typing this.
The second will HOPEFULLY be about the first part about our trip including the camp drop off and maybe the five days that follow it while we wait for his camp to be completed.
I posted on facebook just after dropping Marcus off at camp that I had no tears yet but Mother was crying for me because she had enough that she could show how proud I am of my little man. Although, it’s been an hour driving up towards PEI (an 8 hr drive from camp) and it hasn’t let up. I am proud of my kid but I am not THAT proud that she needs to show everyone in the province for hours on end while we drive in the rain on roads that we don’t know. I want my kid to enjoy his time at camp and not be stuck inside on his first day.
I know I have been MIA for a while but we are in the middle of blending households, selling Ty’s place, the start of soccer season, JDRF Walk Committee meetings and the year end parent council meetings.
Please forgive me if this post doesn’t seem too coherent. These past few days have been difficult for me. There was another child diagnosed with T1D. My partner’s son, CJ, who lives with us most of the week was diagnosed on Sunday, May 19.
I am having a hard time remaining calm and fighting back tears. Not because T1D is anything to lose control over but because I am struggling to remain calm for my partner. He really has no idea what is ahead and I don’t want to scare him but he will soon learn for himself how difficult it can be.
All I can do is remain strong and show my partner that it really isn’t that bad but it takes a huge adjustment at first. The information overload is just insane and fortunately he has Marcus and I to help him and CJ get through the first little while. CJ’s mom on the other hand has T1D herself so she knows what it is like to live with T1D day in and day out.
As you know, the initial diagnosis is a huge shock and most parents blame themselves for their child being diagnosed. I am having some feelings of guilt despite knowing that T1D is an autoimmune disease and it cannot be prevented. I wonder if CJ wouldn’t have been diagnosed if his father hadn’t met me. Both Marcus and CJ were diagnosed while living in my house and I can’t help but feel there is some curse put on me or my house where every child that I care about develops T1D. I know, I know, that sounds irrational but I love CJ like my own child and it sucks that yet another child has to prick themselves and get stuck with daily insulin injections.
I have already been in contact with the Ottawa JDRF office and asked for a Bag of Hope to be ordered for CJ and hopefully it won’t take too long.
I learned to recognize the signs of T1D very well especially since I lived through it.
CJ wet the bed Friday night and we didn’t find out until Saturday evening after he had left. Once we discovered that I mentally started preparing myself for what I knew was coming.
I mentioned it to Ty but I didn’t want to push it. I am not CJ’s mom or parent for that matter. Not yet anyway. I wanted to call his mom immediately and tell her to take CJ to CHEO but I decided to wait and lucky it was the next day that she noticed his frequent thirst and his bed wetting at her house and took him into CHEO were the diagnosis was confirmed. CJ has Type 1 Diabetes. Luckily he wasn’t in DKA but if she would have waited a few more days, he probably would have been.
As I type this Ty, CJ and his mom are at CHEO receiving the T1D for Kids Crash Course with the information overload and I am so thankful that I have the opportunity to help them get through this time. While, I know they are having less information thrown at them because CJ’s mom is a PWD the information is just not as intense as Pawel, Marcus and I had it. I find it kind of not fair. Is that wrong for me to be jealous about this? While I may feel a little jealous over their training I am very thankful to Andrea for being my person who helped me get through Marcus’s diagnosis. Local support is great but I can’t forget to thank everyone online in the Diabetes Online Community worldwide.
With CJ’s diagnosis come changes for Marcus. CJ’s dx happened to be at a time where I am getting Marcus ready to start pumping. Marcus was happy that he was going to more freedom with foods and eat Dairy Queen with the rest of us and not have to worry about not being a “snack time”. Now, we have to worry about CJ feeling left out because it may not be “snack time” – not to mention the carb overload of ice cream. We are forced back to a strict schedule which will be VERY difficult to maintain with CJ living in two houses throughout the week.
Ty and I were talking the day before about all the near misses that we had in the past where we COULD have met sooner. It was said that the Universe took its time to bring us together because it was our time. Little did I know it was my time to have an amazing man in my life and two diabetic children.
Now, with this diagnosis I have more faith in the Universe and it proves to me that I am exactly where I need to be. Whereas with Marcus’s dx I lost all faith but Marcus had faith that he was given T1D for a reason and he intended to find out why. Maybe, his purpose is to help others with T1D.
The Universe may have a plan after all. Go figure!
Below is Marcus’s “kit” it goes everywhere with us and it is like having a baby all over again with respect to always having to bring it with us like a diaper bag.
We have since replaced the yellow cooler with a red Frio ouch but have yet to try it out.