We recently started Nevaeh on the Continuous Glucose Monitor and the MySentry Monitor (to find out a little bit about what these are read previous post). It has been exciting so far! Like I wrote about in my last post we almost immediately saw the benefits of these devices. But what happened last night blew my mind!
On a normal night, I put Nevaeh to bed around 9pm and then set my alarm to next check her blood sugar at 12:30am. Well last night I did the normal routine, set my alarm, and fell asleep. But .......it was not a normal night I was rudely awakened by the EXTREMELY ANNOYING but LIFE SAVING alarm of the MySentry at 11:33pm telling me Nevaeh was going low!!! I stumble out of bed still half asleep get what I need to clean her finger and take her BS. When I get to her and check her BS she is 54!!! Anything under 60 is considered hypo and her doctor wants her to be between 120-150 during the night right now. So you can imagine I felt amazed, shocked, scared, thankful, and many more emotions/feelings at the same time! I could not believe that if this had just been a few nights before I would not have woke up for another hour to check her........and that could have led to a life threatening situation for Nevaeh! I could not believe that it had woke me and that I really was not going to wake up for another hour!
I am so EXTREMELY THANKFUL and BLESSED to have this device for Nevaeh! There's not much more I can say that explains how AWESOME and NECESSARY these devices are! They are LIFE SAVING!!!
Too Good to be True???
Well, we started the CGM (Continuous Glucose Monitor) today and MySentry is connected and working currently in our home so we are pretty EXCITED!!! It really seems to good to be true at this point and I so hope it stays that way!!!
What is a CGM and MySentry you say? And what does it do or help?
Well, the CGM or Continuous Glucose Monitor is a device that is inserted into Nevaeh's tissue that measures the amount of glucose in her interstitial fluid at any given time throughout the day. Once it is inserted it stays on for 3 days (maybe a little longer we will see how it goes) before we have to change the sensor. The CGM takes those numbers and sends them directly to her pump wirelessly and it measures trends throughout the day.
For example, one nifty thing it can do is let us know if Nevaeh is beginning to go low as much as 30 minutes before she actually does!!! You have no idea how GREAT this is for us because we have to worry all night bc we are scared she might go low. And believe me we have some crazy nights. Now the days are a different story bc she can tell us when she feels low but even then now we will know ahead of time and hopefully get a snack in her eliminating the bad feeling she has when she goes low! We actually already did this once today!!!
Now the MySentry is an AMAZING device that has an outpost in her room and then the outpost/monitor in our room that allows us to see at any moment day or NIGHT what her blood sugar is and if she is headed lower, higher, or steady!!! I am almost in the point of tears typing this bc it means so much to me to have this and to know I can rest a little more peacefully! I won't be checking three or more times a night instead I will be checking if I feel there's a need to based on what the scree right beside my bed says!!! If she does begin to go low this thing is no joke it alarms so loudly you can hear it all through the house and it does not quit until you address the situation!
I could go on and on about what all these devices could do and tell us but I don't even know the full extent of it yet! It is really amazing how great technology can be!
YAY!!! Can't wait to test it out further tonight!
What is a CGM and MySentry you say? And what does it do or help?
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| CGM (actual size) |
For example, one nifty thing it can do is let us know if Nevaeh is beginning to go low as much as 30 minutes before she actually does!!! You have no idea how GREAT this is for us because we have to worry all night bc we are scared she might go low. And believe me we have some crazy nights. Now the days are a different story bc she can tell us when she feels low but even then now we will know ahead of time and hopefully get a snack in her eliminating the bad feeling she has when she goes low! We actually already did this once today!!!
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| MySentry (really nice, looks similar to Apple products) |
I could go on and on about what all these devices could do and tell us but I don't even know the full extent of it yet! It is really amazing how great technology can be!
YAY!!! Can't wait to test it out further tonight!
Just Like Any Kid..........Any Normal Kid????
I get so frustrated when I hear the doctors, nurses, and many others say, "She can do anything she wants and can do things just like any other kids!!!" To be honest it makes me mad, sick, and just plain angry! Because it's a lie and I would like to do a play back of bits and pieces of our every day life and see how they explain their statement then.
Yes, she looks normal, but there's so much more to it than just looking healthy or normal!
Here's a recent example:
If Nevaeh can do just like any other kid I guess the other day we should have been able to go to the waterpark worry free! Instead, we had to decide how to handle the situation and prepare the day before since she is only suppose to suspend her pump for 1 hour! What!?! Yes, one hour. So I could have said ok Nevaeh have a blast for 1 hour and then we have to leave but I didn't because I want her to have fun and be normal. So instead I give her less insulin before we go in knowing she could go low because I've seen her do it before with alot of physical activity. Then at lunch I have to go out to the car. Get her pump. Reattach it. Check her blood sugar. Yes, she's high. Give correction. Does this sound normal to you? Then we get up to the food stand to order and I have Nevaeh on my hip and she is holding her pump in her hand in a water proof bag because she's still wet and what happens.......the tube gets hung on her arm and she rips the site off accidentally!!! I have no choice at this point but to tell the staff to hold my order (I've already paid), go home, get her an insulin injection because there's no use in putting on a new site if we are getting back in the water. When we get back to the park we have time to eat with twenty minutes to spare for her to swim before we have to leave for good. And I have highly educated people tell me she can do things like any normal kid!
There are many examples I could tell from only 8 months of experience with this disease! Here's a few short examples:
Several nights Nevaeh has asked me am I going to be ok? What if I go low in the night? How will you know? Is this normal?
Me pulling over because Nevaeh fell asleep in the car but I don't know what her blood sugar is and need to check it? Normal?
Nevaeh saying she's low on the way to somewhere we have to go. We pull over, check, give her what she needs to bring it up and then get to our destination late. Normal?
Snacks at 3am to bring a low up. Normal?
Checking to see if your 5 year old is breathing during the night? Normal?
And the list could go on.....
Please don't take this wrong....I believe we should have a positive outlook overall but be realistic as well!
Thank you for letting me vent a little it is well overdue. :)
Yes, she looks normal, but there's so much more to it than just looking healthy or normal!
Here's a recent example:
If Nevaeh can do just like any other kid I guess the other day we should have been able to go to the waterpark worry free! Instead, we had to decide how to handle the situation and prepare the day before since she is only suppose to suspend her pump for 1 hour! What!?! Yes, one hour. So I could have said ok Nevaeh have a blast for 1 hour and then we have to leave but I didn't because I want her to have fun and be normal. So instead I give her less insulin before we go in knowing she could go low because I've seen her do it before with alot of physical activity. Then at lunch I have to go out to the car. Get her pump. Reattach it. Check her blood sugar. Yes, she's high. Give correction. Does this sound normal to you? Then we get up to the food stand to order and I have Nevaeh on my hip and she is holding her pump in her hand in a water proof bag because she's still wet and what happens.......the tube gets hung on her arm and she rips the site off accidentally!!! I have no choice at this point but to tell the staff to hold my order (I've already paid), go home, get her an insulin injection because there's no use in putting on a new site if we are getting back in the water. When we get back to the park we have time to eat with twenty minutes to spare for her to swim before we have to leave for good. And I have highly educated people tell me she can do things like any normal kid!
There are many examples I could tell from only 8 months of experience with this disease! Here's a few short examples:
Several nights Nevaeh has asked me am I going to be ok? What if I go low in the night? How will you know? Is this normal?
Me pulling over because Nevaeh fell asleep in the car but I don't know what her blood sugar is and need to check it? Normal?
Nevaeh saying she's low on the way to somewhere we have to go. We pull over, check, give her what she needs to bring it up and then get to our destination late. Normal?
Snacks at 3am to bring a low up. Normal?
Checking to see if your 5 year old is breathing during the night? Normal?
And the list could go on.....
Please don't take this wrong....I believe we should have a positive outlook overall but be realistic as well!
Thank you for letting me vent a little it is well overdue. :)
The Beginning of CGM and MySentry
As most of you know we
started the pump in March and then we were told
that we could start the continuous glucose monitor 6 months later so that it's
not so overwhelming learning it all together. Well tomorrow is the day....yes
it came early because they think we are ready! We are ready but I still as a
mom am concerned about how Nevaeh will deal with it tomorrow. She is so brave
with getting her pump site on, but between you and me the needle on the cgm is
MUCH bigger!!! I know she will be brave and please pray I will be as brave as
her putting it on her!
It's also stressful knowing how much this small piece of
life saving technology can cost! As most of you know from the fundraiser we had
back in March the pump, cgm, and monitor cost over $3000 out of pocket!!! We
were blessed to have raised $1010 of that! But after reading a comment from a
mother on a forum I read say that she wish she had the money to purchase a cgm
for her daughter before she passed away from Hypoglycemia (low blood sugar)
early one morning in between checks, Justin and I decided that we would make
payments on this life saving technology for the rest of our lives if thats what
it took!
For those who don't know the CGM (continuous glucose monitor) measures the glucose level
continuously around the clock (while she's wearing it) and will send those
readings to Nevaeh's pump wirelessly, as well as, to the MySentry monitor we will have
in our bedroom! It has AMAZING benefits (there's a long list of great things) like allowing us to know her blood
sugar is going up or down up to 30 minutes before it does!!! So that means I
won't have to worry as much (be up half the night) because if her blood sugar
drops the monitor in my bedroom will begin to alarm and will continue until I
have addressed the issue!!!
I can't explain how much freedom I think this will
give us all. Nevaeh because she will be able to sleep more restfully in her own
bed (and not have to worry if she is going low or not), and Justin and I because we will start getting more quality sleep! It will give us all a little more peace of mind!
Please continue to keep us in your prayers! Most
who have never experienced first hand don't realize the toll type 1 diabetes
has on every part of your life. I for sure had no idea, but every day you wake
up it is there and effects how and when you do things. We are fighters though
and my baby girl is strong and healthier than she was 8 months ago so I thank
God for that every day! Thank you for those who listened and are praying!!!
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