Ok it has now been nearly 6 months of wearing a CGM. I know time fly's when your having fun. Anyhow I have experienced stress, illness, happiness, fun and hardship. I have worked, been on holiday and just been at home. All in all no matter the situation I see the CGM as a valuable piece of my arsenal in this battle with T1.
I have had insertions that have not gone right. For example when you hit a blood vessel and the fluids that the sensor uses to monitor levels are in short supply. The readings can be skewed or in 1 or 2 situations the sensor has had a failure however when it hits the right spot the sensor is in tune to what is happening. In recent months the sensors that I m using, Medtronic Enlite, have also been upgraded for performance as well as comfort. The actual surface size of the sensor component has been reduced and the delay between the blood level and the sensor level and once it is in I have had no problem with even knowing it is there. Other than every now and again catching the sensor on a piece of clothing but that also happens to my site sometimes and I quickly remember it is there and am more careful.
On the old sensor my daughter, who is quite fine in stature being 3 and all had some difficulty with finding the right spot. We had to find some tissue where the stores of fluid under the skin were stable. To tell you the truth we went through a number of sensors that either wouldn't begin or only lasted a day or so before they began alarming and failing. Since moving to the Medtronic Enlite advanced sensors we have had a lot more success. The sensors have been accurate and they have had no problem lasting the 6 days that they are active for. We have had some assurance and piece of mind over night knowing that if there is a unsuspected drop then the alarm will sound and we will be alerted before it becomes a problem.
In recent weeks including a weeks stay in hospital due to my 3 year old T1 catching influenza A, the CGM was invaluable. We could see when things were just not working and we were able to keep her out of DKA. Her ketones were out of control but we managed the fluid intake and the BSL level for as long as we could at home before we had to make the move to hospital. With the Flu and a viral eye infection she looked like hell but we kept her from what we would consider a night mare in DKA. Even when getting into hospital the doctors where surprised that we were able to maintain as we did for the time we did. We are thankful for the tools we have that are there to help each and every day.
Looking at the advancements in the last 23 years I now wonder what is next. I see articles trying to say that they are close to understanding why T1 happens and I see the trials of a artificial pancreas that will be able to administer both insulin and glucagon in small amounts to make sure levels are maintained. I see articles on all other types of pumps and thoughts on management such as inhaler medications and I am excited as to what is next. Working in the IT industry I see how quickly the world is changing and I know that the advancements that are to come will come thick and fast. There will be a option that will suit all of us and hopefully will make us even more successful I managing this disease.
Saturday, 23 August 2014
Friday, 8 August 2014
When sickness hits!!!
This week continues to be one to forget. After a semi easy week our older 2 daughters arrived home from a trip to Fiji. I know nice, huh? It would have been until I got the phone call saying that they were home and heard the words that my oldest daughter had been vomiting within the last 12 hours.... To tell you the truth I and my wife began freaking out cause unlike a non T1 family we have the difficulty of managing the sickness along with the massive dangerous roller coaster that T1 can bring. To put it simply also was that our little T1DD who just got over a cold and in the 9 months of T1 D had never had a gastro bug..... I sit here now and I can no longer make that statement. I sit here after a day of vomiting, crying, stressing, arguing and T1 D trying to get out of control. Not a day I would recommend to anyone.
But to go back a step in this household seeing as there is 2 T1D's and 3 non D's you would hope that maybe the world would give us a break however that was not the case. I was the first to catch the bug. With sensor attached and the pump on my hip the sickness took hold. Vomiting and fever began and took hold for over a 24 hour period. Some liquids but no food over that time at all. It was at that moment that over the last few weeks I had been doing basal testing and working out my correct levels. I actually watched my levels stay level through this ordeal which was great to see. Another great benefit of being on the CGM, it meant that I could concentrate on the problem at hand and have confidence that I was not getting into trouble with my levels.
After nearly 2 days I am finally back onto solids and able to say that things are back on track....
Just as I did say that to myself the next episode began, our 3 year old T1 went down hill quickly. I got the call from my wife just after she was shopping to tell me that the gastro bug had hit again and that she had vomited everywhere. The problem was that, unlike my T1, her's was taking it hard. Her ketone level's rose from 0.1 to 2.2 and she refused any liquids or medication to try and help. I began coding my wife in sick day management which included the increase of insulin to try and flush the ketones and an effort to get some fluids in to try and keep dehydration at bay.
By the time we had gotten to the 2.2 ketone level we gave ourselves 1/2 an hour before we headed to the hospital. Luckily our daughter finally took some panadol to try to get the fever to drop and she started to get some colour back in her face. We continued to check he BGL and ketone level and the were down to 8.6 and 0.9 respectively. Now this was not an easy feat as each time we wanted our daughter to drink some liquids it meant an argument and ultimately some sort of bribery but we have had sips every 5 to 10 mins. I know probably not enough but it is doing something to bring the levels into check.
Unfortunately as mine lasted for over 24 hours it is not going to be a restful night for mum and dad as we need to continue the fight while our baby tries to get some sleep and allow her body to rest.
I congratulate my wife in her first serious bout of gastro and her management. She has been tough when needed to be and loving and understanding for the rest.
This battle with T1D is never welcome and never pleasant and all we can do is manage the best we know how. If we falter then we know there is help with the doctors but for now we try and try our hardest.
But to go back a step in this household seeing as there is 2 T1D's and 3 non D's you would hope that maybe the world would give us a break however that was not the case. I was the first to catch the bug. With sensor attached and the pump on my hip the sickness took hold. Vomiting and fever began and took hold for over a 24 hour period. Some liquids but no food over that time at all. It was at that moment that over the last few weeks I had been doing basal testing and working out my correct levels. I actually watched my levels stay level through this ordeal which was great to see. Another great benefit of being on the CGM, it meant that I could concentrate on the problem at hand and have confidence that I was not getting into trouble with my levels.
After nearly 2 days I am finally back onto solids and able to say that things are back on track....
Just as I did say that to myself the next episode began, our 3 year old T1 went down hill quickly. I got the call from my wife just after she was shopping to tell me that the gastro bug had hit again and that she had vomited everywhere. The problem was that, unlike my T1, her's was taking it hard. Her ketone level's rose from 0.1 to 2.2 and she refused any liquids or medication to try and help. I began coding my wife in sick day management which included the increase of insulin to try and flush the ketones and an effort to get some fluids in to try and keep dehydration at bay.
By the time we had gotten to the 2.2 ketone level we gave ourselves 1/2 an hour before we headed to the hospital. Luckily our daughter finally took some panadol to try to get the fever to drop and she started to get some colour back in her face. We continued to check he BGL and ketone level and the were down to 8.6 and 0.9 respectively. Now this was not an easy feat as each time we wanted our daughter to drink some liquids it meant an argument and ultimately some sort of bribery but we have had sips every 5 to 10 mins. I know probably not enough but it is doing something to bring the levels into check.
Unfortunately as mine lasted for over 24 hours it is not going to be a restful night for mum and dad as we need to continue the fight while our baby tries to get some sleep and allow her body to rest.
I congratulate my wife in her first serious bout of gastro and her management. She has been tough when needed to be and loving and understanding for the rest.
This battle with T1D is never welcome and never pleasant and all we can do is manage the best we know how. If we falter then we know there is help with the doctors but for now we try and try our hardest.
Monday, 4 August 2014
Fears
One of the first things my endo ever told me when considering the pump is that "The pump is not a cure! It is a management technique and if abused it can be dangerous as things can change quickly." I sit here now and wonder whether or not the rigorous and strict beginning was a blessing in disguise.
To this day I still try to live the diabetic lifestyle and diet (Before there are comments I know there is no such thing as it should be moderation and nothing in excess and I suppose that is what I mean). I steer clear of normal soft drinks like it is poison. I limit any sweets so that it doesn't blow out my BGL. The only reason I look at this is because I see how my daughter, who has been on a pump since day 2, has to an extent continued with her life as it was. I argue with my wife cause to me if we are able to put some rigor in place now it will make the journey later in life easier. I look and wonder if in 20 years will she have the knowledge to make the right decisions to make sure she steers clear of complications.
Within this world of expanding choices and accessibility to anything I fear that if my daughter doesn't understand limits then her journey will be made up of difficult experiences. On the flip side also life is there to be lived and sometimes making the wrong decisions is what makes you learn the best. So maybe it is a mixture of giving the foundation of what the right choices should be while knowing that every now and again the bad choices will prevail and as long as they are choices that are learn't from then this is ok.
After living completely inside this battle for over 2 decades and now within a side battle of MS the biggest thing I have to learn is to understand what it is like for my little baby to grow up with this and not know any different. I was 10 when I was diagnosed so do have memories of what it was like without it but she will never know the difference. I have to understand that she will one day understand why we have had to do so much for and too her. All I want as we all do is for her to have the best future she can have. This will mean structure and processes and also a whole lot of time where life comes first (of course with T1 along for the ride).
She will be taught at the minute that the pump is only a management tool and that it is something to be respected and used within guidelines so that the dangerous part is kept at bay.
To this day I still try to live the diabetic lifestyle and diet (Before there are comments I know there is no such thing as it should be moderation and nothing in excess and I suppose that is what I mean). I steer clear of normal soft drinks like it is poison. I limit any sweets so that it doesn't blow out my BGL. The only reason I look at this is because I see how my daughter, who has been on a pump since day 2, has to an extent continued with her life as it was. I argue with my wife cause to me if we are able to put some rigor in place now it will make the journey later in life easier. I look and wonder if in 20 years will she have the knowledge to make the right decisions to make sure she steers clear of complications.
Within this world of expanding choices and accessibility to anything I fear that if my daughter doesn't understand limits then her journey will be made up of difficult experiences. On the flip side also life is there to be lived and sometimes making the wrong decisions is what makes you learn the best. So maybe it is a mixture of giving the foundation of what the right choices should be while knowing that every now and again the bad choices will prevail and as long as they are choices that are learn't from then this is ok.
After living completely inside this battle for over 2 decades and now within a side battle of MS the biggest thing I have to learn is to understand what it is like for my little baby to grow up with this and not know any different. I was 10 when I was diagnosed so do have memories of what it was like without it but she will never know the difference. I have to understand that she will one day understand why we have had to do so much for and too her. All I want as we all do is for her to have the best future she can have. This will mean structure and processes and also a whole lot of time where life comes first (of course with T1 along for the ride).
She will be taught at the minute that the pump is only a management tool and that it is something to be respected and used within guidelines so that the dangerous part is kept at bay.
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