Our sweetie pies

Our sweetie pies

Monday, November 30, 2015

tough times

Times are tough.  We are approaching the holidays and there are many things to think about.  There have been new terrorist attacks and more questions about safety.

Where is our security and provisions?  We believe in a purpose and a creator and a God who is the author of life and provider for all of our needs.

If anyone feels moved to contribute to us financially, we are always thankful for ways that God is able to provide through others.

Sunday, November 29, 2015

a conversation with kids about diabetes

This afternoon the conversation came up amongst the kids as to what would happen with their diabetes supplies if a cure for diabetes was found.  My non diabetic son asked if we could return their pumps and meters and all the other supplies and get a refund!  What a nice thought!

I then suggested that if the kids suddenly had a cure for diabetes they might do more than just think about mailing back their supplies for refunds.  I suggested they might take everything they can find that is diabetes related and make a pile in the backyard and set it on fire!

I suggested that there might be such a joy and sense of freedom that they may dance and sing!  Imagine a life free of all of the duties and worries of diabetes!

My son then suggested that maybe the pumps could be shot into the air like rockets and explode!

But then my daughter said that she doesn't want to be part robot with an artificial pancreas.  She'd rather stay as is with her own body parts and  manage diabetes.

But then I shared that there are so many doctors working today that by the time the kids are grown ups the doctors might have a solution without artificial body parts and then we discussed all the work being done with cancer.  Then my son remembered a story of cholera from the book The Secret Garden and how so many people died from that disease and how sad that was.

I then reminded him that we have ways to vaccinate against these diseases and many diseases are not problems today and hopefully diabetes will be one of those one day too.

Such a conversation for lunch after church and for future problem solvers that are also compassionate as they live it everyday.

very low

I was working on my paper for a class I am taking and I suddenly hear her alarm alert me from down the hallway.  Every night, we check our kids, atleast twice each in the night to make sure their blood sugar levels are  within range.  My husband had gone to bed and I thought he had checked her.  When I got up to check her cgm and why it was alarming, I'm wondering if it is going to say she is low or high.  Her target number is 130.  Under 70 is dangerous and over 200 is too high.  I guess she must be low because last my husband said, she was 80 and needed milk to drink.

I quickly walk over and look at the screen.  It should have a number.  When their number gets too high, over 400, it will just say "high".  When she is under 30 it will just say "low"  and if they go any lower, that is very scary and very dangerous.  Lows can lead to passing out or even seizures.

When I look at her screen, it says "low".  I don't even recheck her blood sugar levels with her meter.  I just quick grab a juice and get her to drink it.  She responds and drinks so that eases my mind at least.  The cgm is not always accurate so it is possible that the numbers were off.  After she drank her juice I finally tested her and her meter said 78.  So I don't know how low she really was but her cgm stated 50.  After a little bit her cgm adjusted to 86.  And then I gave her a drink of milk.  I will have to go check her again when I am done typing this to make sure she stays over 100 to sleep.

That was a scare.  We never get rest.  This follows us everywhere we go.  This is way we educate because type 1 diabetes is not a matter of sugar and blood tests, it's a matter of life and death.

Friday, November 27, 2015

continuous glucose monitors for managing diabetes

This is some new technology for us.  Each of our children with diabetes at different times finally received a cgm (continuous glucose monitor)  that they wear in addition to their insulin pump.  This gives us a continuous reading of their blood sugar levels.  It gives us a range that they should be in and alarms us when their glucose levels go to high which makes them sick or too low which is dangerous and can cause them to pass out or worse,  This gives us some piece of mind when we are sleeping and while they are in school as we can text their teachers and ask how they are doing.  A good range for them is above 70 and below 200.  As you can see in these screen shots, this particular moment our daughter's on top was in range and she was holding at around 129 which is great.  Our son's on the bottom, was dropping fast and he was 69 and going down which is not good.  That is when he requires juice or smarties to get him back above 70.  We have had many episodes where he is sleeping at night or even in the afternoon where one of them drops and then we need to sit with them and get them to come back up with juice.  Most recently when  he dropped low, he refused juice and I finally had to grab frosting and put it in his mouth  to get him to respond enough to be willing to drink juice.  So here it is.  Some peace of mind with a little technology and a little more in depth look at life with type 1 diabetes.

November is Diabetes Awareness Month

November is diabetes awareness month.  Here are our two children that live it everyday.  Never a break.  24 hours.  I knew nothing about diabetes when our daughter was diagnosed five years ago.  I didn't even know what an endocrinologist was.  I thought she had a bladder infection because she kept using the bathroom.  but then she was tired and losing weight,  The doctor did a urine analysis and immediately arranged for her to go to the hospital.  I was blind sided to say the least.

Our son became really thirsty two years later.  I thought it must be a cold or the hot weather.  But then I watched him drink a full glass of orange juice, then milk, then water, then he threw up.  I finally got brave enough to use her meter and check his blood sugar.  He registered high glucose which means over 600.  Normal is around 100 or less.  Such heaviness.  I called her endo and again we made a quick drive to the hospital late at night.  Our daughter was excited for him.  she would have a diabetes buddy.  she was only five.  In her innocence she was excited for him.

We pray that our diagnosis stop at two.  But our odds are high for another child to be diagnosed.  We worry when anyone is thirsty.  We didn't ask for this but here we are.  We love them and wouldn't trade them for anything.  and yes, life goes on.  thank goodness.

I'm back blogging!

It's been awhile and a lot has happened since I last blogged.  I last announced that I was pregnant.  This was my sixth child.  My fifth pregnancy.  My third pregnancy was twins.  This pregnancy took a turn for the worst.  I was sick at the beginning as I always am, but by my 33rd week, I began to feel sick and slow down.  I had hoped to have a vbac delivery, a non cesarian delivery.  I found a hospital that would support this decision.  The doctor required a stress test to begin at 32 weeks.  This is probably what saved my life.  

They discovered that my blood pressure was too high.  I had never had high blood pressure.  I noticed that my ankled were swelling.  My ankles had never swelled before.  My doctor decided that it was pre eclampsia.  I needed to take it easy and be monitored twice a week.  But I had a headache and that worried the doctor.  They asked me to come in again and be checked.  When I was there my blood pressure was too high.  They found ketones in my urine.  This is a diabetes term that we watch for with our children.  But this meant something was wrong and my kidneys were having trouble.  I was taken by wheel chair to the hospital from the doctor's office.

They began to discuss immediate c section that night, but I began to respond to fluids and rest.  They waited a few days and actually suggested that I could go back home.  I refused.  A c section was performed 4 weeks prior to my due date.  I had to be put on magnesium for 24 hours during and after to prevent seizure.  I was heavily medicated and sick.  The baby was born.  He was good weight and only suffered from jaundice, some low blood sugar and later a heart murmur was discovered that has since been resolved.  I, however, got worse instead of better.

They thought the birth would alleviate my symptoms.  However, I couldn't breathe.  The doctor prescribed anti anxiety medicine.  Then they decided it was pneumonia.  They wanted me to take a shower and take care of my baby.  I couldn't.  I couldn't get out of bed.  I couldn't lay down.  I couldn't breathe.  A doctor finally agreed to look at my heart.  And there it was.

My heart was too large.  It was leaking.  It was beating erratically.  I was in heart failure.

They started medicines and decided I could go home in a few days.  I went home.  and barely made it through the night.  My ankle was very swollen again and I couldn't breathe.  I found the doctor's phone number after sitting up all night and they advised me to come back to the hospital.  There I was admitted to the cardiac floor and my baby was left at home with my mom.

For two weeks, I was given medicine, stopped breastfeeding, given lots of lasix to drain fluid and experienced an angiogram.  I was finally deemed okay to go back home.

That was a year ago.  I am still on medicines but doing better and my baby just turned one and is doing well.

so far now, we are adding cardiomyopathy to the list of the medical knowledge I now carry in my unofficial proverbial medical bag.