Tuesday, December 29, 2009

The holiday that almost wasn't....

Christmas is over. My tree is put away. The gifts are tidied and everything new has a home. The weather has been wonderful...barely a peck of snow to be seen so I decided to hop in my car and take my boys on a road trip for a week. We had planned to spend some time with loved ones elsewhere in the province so two days after Christmas we hit the open road.

I had spent Boxing Day cleaning and packing. By the time midnight came around I was exhausted but certain that I had all that I needed for two young men, two dogs, myself and life with diabetes. The cooler was packed. Insulin was stockpiled. Test strips and spare meters were safely tucked away. I had enough infusion sets to last two weeks and enough cartridges for a month. Life was perfect!

We set out early Sunday morning with the sun shining. This was going to be an incredible week. We had a lot of plans with great company. The trip was 8 hours long in the summer so I anticipated it being a little longer during the winter. With the lovely roads and Mother Nature on our side, we made great time. We listened to music, set travel basals, and ate clementines. Liam's rates began to climb a little but he corrected and we continued on in holiday bliss.

Within two hours of our destination, I reminded Liam to test and noticed that he was just grabbing a meter and getting ready to lance his hand. I asked if he had washed his hands. He said no and asked if I had any handwash? Hold it right there! What did he mean did I have any hand wash??? What was he washing his hands with the entire trip? I knew for a fact that the last time he tested was right after peeling a clementine for his brother and me. His hands were covered in fruit juice! He was high but what was the juice reading and what was his blood???

My heart dropped. I was terrified. My head knew that if he had endangered himself that we would have seen the repercussions by now but I began to shake. I kept driving for fear of completely losing my temper out of pure terror. His correction would not have been small. Images of seizures while I was driving were flashing through my head. I kept trying to breathe and stop shaking.

Eventually I settled to the fact that he was still alive and somehow he had once again lucked out. We arrived at our destination and began to unwind once again. We sat down to a lovely meal and unpacked our bags. Soon we headed to bed but for whatever reason I was awake by 1am. I went in to test Liam and not surprisingly he was high. I went to correct and noticed that he had ONE unit of insulin left in his pump! I began to search through our bags to find the cartridges. I found the insulin. I found the infusion sets. There were no cartridges! By 1:30 I decided to try to refill the cartridge we had and deal with things in the morning. With fork in hand I managed pry back the plunger and then proceeded to inject insulin into the cartridge. The kitchen smelled like bandaids by the time I was finished but he had insulin and I could breathe for a bit.

In the morning I called the pump company for help. I was told that this was a supply issue and not a pump issue so I had to call the supply people. They kindly gave me the toll free number which I called. Sadly they were enjoying Christmas and could not take my call at the moment. They said that I could leave a message and I did. While waiting to be able to talk to a real person the next day I refilled the cartridge that had more than a few air bubbles from my 2am filling. The next day I waited until noon before trying the supply company again. The good news was that it rang. The bad news was no one would answer! Thankfully I happened to have recently been in contact with a VP for the supply company and had his email address still sitting on my Blackberry...shock of shocks, I didn't lose it this time! I sent off a desperate email hoping that he was not on holidays and that he didn't think me too much of a pain.

I literally screamed with joy when I got a reply asking for the address I was staying at. He said he would try and have cartridges here for me the very next day!

Despite a bit of a bumpy start, my holiday has been fabulous. Great weather...anything that does not resemble snow in December is great in my world! A wonderful host and now insulin cartridges!

Happy New Year!

Friday, December 25, 2009

Happy Holidays

Every day I have meant to sit down here and write about so many things. There has been rumblings of advocates in Ontario wanting to see change in schools. There has been my own research and internal battle on whether or not to get a CGMS for my son...and of course there has been the diabetes roller coaster ride that just never seems to end.

The past 24 hours however have had me recollecting "Christmas with diabetes". Times have changed a lot over the years. We no longer wake Liam up to eat at certain times or require that meals be at a set point in the day with a fixed carb value. This year his teacher gave him a box of Rollo chocolates for Christmas and his breakfast was a diet root beer that he found in his stocking--at true breakfast of champions! He was woke up when Mom was tired of staring at the gifts and wanted company. Brunch consisted of eggs, turkey bacon, toast and chocolates. Our Christmas dinner was a never ending plate of potatoes, stuffing, salads, and turkey with diet Pepsi in a wine glass and apple crisp to top it all off. His pump was steady trying to keep up with the next plate full of food but I guarantee the child is not hungry this evening!

There has been a bit of extra testing today has he embarked on some Wii mountain climbing and high powered dirt biking. After listening to my ceiling rattle and waiting for things to cave in, I felt that a bit of testing might be a good idea. Ironically all was fine!

There were some things that reminded me that our lives are a little different because of diabetes however. Last night I chose to take my kids to Christmas Eve mass. We are not a religious family but its a tradition upheld by friends and one that I felt would be nice to continue with my children. The families all walked over to the Church. Liam needed to test once we found a pew but was concerned about the noise of the meter. I turned off the "beep" and he tested. I am sure whoever vacuumed in there today found a stray test strip. It would have jumped from his pocket I know it! He was running a little high and it was noticed by the family we were spending the evening with. They were shocked to see Liam have only one piece of pie. My dear friend finally turned to him and asked "Who are you and what did you do with our Liam?" Liam said "I am high and I just can't really eat right now."

You have to know how odd that would sound if you didn't live with diabetes! Thankfully they have been around us for the past 12 years and are fully aware that it is not a big deal for my 12 year old to be "high". Well they know its a problem and they understand that he doesn't feel well but they are not searching for drug paraphernalia or calling child protective services.

I have done a lot of personal reflection over this holiday season and its amazing how far we have come. Diabetes, the teen years, and puberty continue to threaten my sanity but with the many advances in care and the support of new and old friends--we are truly blessed and will somehow make it through this ride stronger and richer for the experience.

Happy holidays to one and all and thank you for being their for us!

Saturday, December 12, 2009

New tricks for an old dog

After feeling like a failure upon receiving the last diabetes "grade", I sent myself back to school. I got out the John Walsh "Pumping Insulin" book and began to carry it around with me. At first it simply enjoyed a few rides in the car but eventually I took it out of my bag and began to read.

I have read these books more than once and keep them for a reference source. After pumping for seven years, I decided that it was time to see what more could be done. If needed, I was willing to completely start over with basal rates and bolus ratios. There had to be something I could do to help me get through puberty...well besides let go.

The first few chapters were all about why people would want to pump, what to look for in a pump, etc. Great information but not what I needed to know at the moment. I kept reading because I knew that no matter how basic some parts may have seemed, I was going to learn a lot once again. Sure enough it happened! It was not exactly like a lightening bolt revelation. It was more like a "you must be kidding? Who could really do this?" sort of moment. In fact I instantly pulled out my blackberry and sent out an email asking "who can really do this??" Well it turns out a lot of people.

John Walsh was discussing the importance of prebolusing. When you are dealing with a small child this task becomes almost impossible--well at least in my house. We never knew if Liam would eat anything let alone to try and prebolus for an entire meal 20 minutes before he was going to eat! Recently I had been told to get him in this habit of prebolusing. It would have a real effect on his A1c. We had been trying but I wasn't going crazy about it. After reading the chapter and talking with other parents, I decided to be a bit more aggressive with this. We began to prebolus as soon as we were preparing to sit down for supper. We were still far from the required 20 minutes but much better than 20 minutes after we had begun eating or worse--simply forgetting altogether.

Prior to this revelation I just didn't know what to do. There were highs that I could not bring down and I was going crazy. Maybe hormones have just been kind to me but we have been prebolusing for a week and WOW! Readings have been in range an incredible amount of the time. It almost scares me when I look and see such great readings. Now when Liam is on his own, he is still not perfect. He still forgets to bolus let alone prebolus but when he is around Mom the new habit of test, bolus and prepare your food is working for him.

I went a step further today and asked "have you noticed how great your readings have been? Don't you feel really good?" The answer was typical Liam, typical teen..."My readings have been in range? I didn't notice." Ahhhhhh! Oh well Mom noticed. Mom feels a bit better and will take this small bit of respite while I can because I have been assure that it will definitely not last.

Wednesday, December 2, 2009

Failing Grade

Its funny how everyone thinks of the A1c test if it is the true measure of your ability to be a pancreas. What is supposed to be a guide becomes a ruler on which to judge if we have "passed" or "failed" in our ability to beat the diabetes gods for the past 3 months.

Liam's A1c was done about a month ago. We finally got the results yesterday. I knew I would fail. I knew I had been a bad pancreas. I knew that I wasn't logging. I knew that Liam not testing and me not being on top of it all would come back to bite me. I also knew that my son had begun puberty and hormones were now seriously messing with our ability to get any sort of handle on control.

I failed. By my standards I failed rather miserably. I believe it is the worst A1c we have had. Yes it could have been worse but I still feel that I have failed. I know there has been a burn out factor and still the good old "mommy guilt". I am burnt out after all of this time and yet my child will have to carry this burden for much longer than I will. Who am I to burn out so quickly?

Good or bad, Liam has a much more lax attitude towards his disease. He takes things as they come, corrects as he goes along and does not seem bothered by much. Mom takes each high or low as a personal failure and over the past few months it has been worse than ever. I have become my own worst critic. That is not a good thing.

I have had to step back and look at the advice I give so many newly diagnosed parents...look at the world 4 hours at a time. If you have a good 4 hour period be proud and know that you were a good pancreas. If you get a longer stretch with good numbers then do a happy dance. You were amazing! We have seen good stretches. I have made good calls but I am still sending myself back to school. Time to dig out the John Walsh "Pumping Insulin" books and make some new notes. I haven't sat down with any of them in a few years and I think I need to start fresh. Its time to clean out the cobwebs and look at things as if I was just starting out. Its easy to get complacent. You cannot let diabetes rule your life but complications are real and a good respect of the "gods" you are playing with is not a bad idea either.

Back to the books!