CGM? Insulin Pump?…..Is it JUST the Parent’s Decision?

Right Decision, Wrong Decision Road SignI wear glasses for reading.  I hate them.  I hate that my age caught up with me and those letters became fuzzier and fuzzier until the inevitable became the reality…..I got glasses.  I hate wearing something on my body that was not born with me into this world.

I’m sure you can see where this is going.  For some time I have seen posts from people asking about insulin pumps and CGMs.  Should we get one.  We are thinking about…. We were discussing and we want to get Suzie a pump…..
Now understanding that age surely plays a role in who is involved in the decision process but on many occasion I hear nothing of the child’s input to the decision about attaching something to their body, moving forward.  And two things if you count a CGM.

I just want to remind everyone that unless you know what this is like, do not make the decision with too much haste.  When Kaitlyn was diagnosed, we wore the pump (with saline) for seven days. It’s a royal pain in the butt to be quite candid.  I can only imagine what this is like FULL TIME.

I would love to tell you what to do here, I know what we did, but that may not be what you need, or want, to do.  SO I ask all of you to chime in.  Did you discuss with your child about the wearing of a CGM and/or an insulin pump before you went ahead and purchased one.

If, in any shape or form, you came to a conclusion on your child wearing a device; how much were they in the equation?   It can be a decision that is agonized over for some time.  Many people go through this….so this discussion could be a big help.  And again, please reply to this post here and not on the FB page so everyone can read it here and follow it.

To recap: was/is your child with diabetes involved in making the decision on an insulin pump and/or a CGM?  And to those who are on a pump and CGM; how would you have felt if your parents made that decision for you?

A dialogue begins………..now.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’

 

Halloween, Diabetes……Be Afraid, Very Afraid…….REALLY?????

boo halloweenThis week is Halloween.  Halloween means so much to kids.  Our kids with diabetes are no exception.  I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn; “…I did not know what to get for her.”

People can surely be wonderful.  We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that she would do that ‘going low thing’ would not only occur but almost always at the exact same block each year.  She would carefully choose something out of the bag. (of course juice boxes and ‘stuff needed’ were readily available ‘just in case’ as well—but letting her choose something from their bag…why not?).  We would wait a few minutes and continue on.  Fun and frights continued.  On this day our kids strive and want to be just like all the others kids…….AND THEY  SHOULD BE.

I remember many conversations from people who do not live with diabetes in their household how much Halloween must be a disaster for us, having a child “who cannot eat candy”.  People thought that we would deprive our child of this incredible right-of-passage.  Those of us ‘in the know’ know better, don’t we?

If you do not know….you should learn how close to normal you can make this day.  Our kids are not driving close to a cliff during this day.

Of course we would control the candy; some gave money in exchange, some put the candy outside for the GREAT PUMPKIN to take and exchange for a toy; but we always controlled what the kids ate and went through it all like every other parents do each year.

We all do those things.

There are many things that you can find online about kids, diabetes, and what to do.  Today I want to check in with where YOUR head is at.  You should not be afraid (pun intended) of this day and you should spend the time enjoying your kids while they enjoy the day.

Diabetes never stopped us on Halloween and it should not stop you either.  Go and enjoy.  This is a holiday for kids to enjoy and with a little knowledge and a little ‘smarts’, the only frightening thing about the day should be at your front door when the doorbell rings.

Be afraid……..be very afraid?   Nah…….enjoy; Halloween is nothing to ‘spook’ you.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

Good A1C??????….Don’t be So Quick to Jump Up and Down.

excited-peopleI have written, on many occasions, how an A1C should be used as a gauge in our children’s diabetes tool box (or for yourself if you live with it every day 🙁  sorry).  I have constantly stated that it is a gauge to be watched and adjusted but not to live by the results and beat yourself up (or your children) because it is too high according to your Doc.

It’s not a number to be beat up over.  That said; the opposite should be true as well.  Now I know there are those who might feel that ‘any’ chance to celebrate something in this world of diabetes is worth celebrating but I ask you to side with caution on being too excited at a reading that makes you happy.  Remember, this is a marathon and not a sprint.

To celebrate and get so extremely excited over a ‘good’ A1C is something I have cautioned as much as I have stated that one should not beat themselves up over when it is a ‘bad’ A1C.  As sure as I am sitting here, that A1C will be high again.  And if you have been so overly excited at ‘THAT GOOD’ number, and your child witnesses ALL OF THIS, it will only be THAT MUCH MORE they will fall when they feel like they failed because the A1C went high again.  And it will be high again.  And they will feel like they failed.  You will fail like you failed. And THAT they did not.  And THAT you did not.

Again, it’s about balance (as the late Dr. Richard Rubin taught all of us).  I have always found the A1C to be a ‘conversational gauge’ with our kids.  No matter the number, take the opportunity to discuss with your child why the number is what it is and what needs to be done to maintain (we hope) the number or to change it accordingly.  Use the A1C result as a discussion whether ‘good’ or ‘bad’ (notice every time I put those words in quotes—it is for a reason).

And yes…..they look online more than you think.  So hooping it up and being overly dramatic with a number shared online, will be seen.  DO NOT MISUNDERSTAND me for one second; with two kids living with this disease I’m as happy as the next person when an A1C of 6.2 is returned.  But my reaction is usually the same,  “Why do you think the number was where it was?”

If I’m not going to beat up myself–OR MY KIDS–for a high A1C–I’m not going to jump up and down when it is perfect (perfect?) either.  Anything else will send a mixed signal when the number is not where we would all like it to be……..and that is no one’s fault—–that is diabetes.  Not their fault they have it, not their fault what it does.  A1C is a gauge—nothing more, nothing less.

Food for thought.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Canada Reminds Us…A Letter To Our Elected Officials…Do You Remember?

911 flag and buildingsMy article yesterday was to our friends in Canada.  I received a message of thanks from someone and she added this at the end of the message:
“…..the leaders of our three parties shared public hugs and well wishes(in our current government, this is totally rare- they’re usually verbally fighting)….”

As we get closer to our election day in America; I’m compelled to write the following:

Dear Elected Officials;
Do you remember?

Do you remember the horror on the faces; the many lives that were lost, the incredible fear, and the many speeches you all gave?

Do you remember?

When so many lives perished in three separate locations thirteen years ago on 9/11 and the speeches you gave were of resolve, hope, and that partisan-ship was gone and we were one.  Being “American” trumped everything else.  Do you remember?

In New York, I saw it first hand.  Perhaps you did too.  Perhaps you were not actually at any of the sites to witness it, but you surely felt it from your constituency as you heard stories of pain and loss.  I saw it first hand and so did many others, we will never forget–but do you remember?

Every one of you; EVERY SINGLE ONE OF YOU who held an elected office JUMPED on the bandwagon and trumped the cause of “being American above all else” in speech after speech after speech.  We remember, do you?

As I watched the compassion in Canada ‘the day’ after; I saw their elected officials acting as we once did.  Politics aside—–they are all Canadian.  I’m sure you watched too……but…..do you remember?  You in presently elected offices made me think, as I watched, but how long will that last?  Will they be just like us?  How long before that feeling diminishes.

And I became sad.

DO you remember enough to, at least, try to treat the office you hold as if it were the gift that the people of this country entrusted with you?  Any elected position from the smallest capacity to the President of the United States; do you remember a time when YOU PROMISED US that you would work hard to make sure the American Spirit would not be lost to terrorism?  There was an US in USA.  Remember?

As I presently witness the incredible negativism in this year’s elections, local as they may be, and I see the absolute attack on every personal aspect of opposing candidates; I find myself asking the question as I do when I see the disclaimers after a TV ad about a medication; “….why would ANYBODY want that?”

This year, if I listened and acted on what I heard you all say about each other—why would I want….any of that?  All the way to our Nation’s Capitol, if someone says X—–Y is screamed louder—–only to make the voices behind X get louder still.  The negativism, the pointing of fingers, the vile, the lies, the shouting, the hatred, and the jockeying to obtain ‘the power’ is truly sickening.  It was not supposed to be about power…it was about representing…….us!

It was wonderful to see the hugging and honest emotion as I watched Canada’s elected officials yesterday.  It made me wonder about what the thousands and thousands of Americans who lost their lives thirteen years ago, and also lost their lives ‘going back into war’, would say if they could speak about the behavior you all show now; as oppose to what was shown immediately after that horrific day.  You promised us…..and more importantly……..you promised them.

Do you remember?

Sincerely,
I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

 

To My Canadian Friends……….With Love.

Canadian FlagI started writing my article today and I am filled with the horror and sadness of the news from our neighbors to the north.  And I am compelled to relay my feelings.

My heart aches today for Canada.

A soldier, standing at a tomb of unknown soldiers—unarmed—gunned down for the reasons we all now know as meaningless….is something I just cannot get my arms around.  A soldier dies, and a hero comes forward as the Sergeant-at-Arms Kevin Vickers, ended the day where surely more people would have died.

This is not a day to re-hash arguments about ANYthing.  Today is a day to mourn the loss of a soldier, Cpl. Nathan Cirillo, doing his job in an area where he should not have given his life; and the story of a hero putting a stop to a deranged gunman, because it was his duty.

The gunman who, if it is all the same to you–I choose not to mention and give him one additional iota of recognition which he deserves none, was carefully and methodically covered in black with a scarf half covering his face performing the most cowardly act ever—–shooting someone who had no chance whatsoever.

He shot, by all accounts, a good man.  And for this I am so saddened.

Since 9/11, these acts have impacted me completely different.  They are all personal.  One person is too many and 3000 people is a lot of ‘one persons’ too.  As each one is a person with a family, a life, a hope, and a future………no more.

My diabetes world has taken me to Canada a few times and even to their Capitol.  My friends are in Canada.  I’m sure I have photos somewhere of a soldier by that tomb, meaning I have stood on that ground, which will forever be considered more hallowed than it was before.  That unknown tomb will now represent those unknown plus one other who was known and gave his life in honor of those who never will be.

The gunman failed.  He wanted to disrupt government and make people afraid.  I’m sure the government will go on; and life for many will go on without fear.  Perhaps a little more understanding of the fact that differences may occur in a house of Parliament, but at the end of the day they are Canadians; together.  As we have learned once, and were painfully reminded that we, here, are all Americans.   We are all people.

To my many friends across the border who I have been fortunate to meet in our diabetes-pathways, I hurt for you today.  We hurt for you today.  Your pride and your resilience will get you through this—-you have a beautiful country with beautiful people.

As former President Bill Clinton once stated; In a world darkened by ethnic conflicts that tear nations apart, Canada stands as a model of how people of different cultures can live and work together in peace, prosperity, and mutual respect.

Nothing should ever take that away from you——and we may have very well learned on a day when someone thought they could—that no one ever will.

God Bless and keep all of you.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

 

A Painful Event, Tears….and a Few Lessons to Share….My Little Girl.

Kaitlyn FlowerFunny that at the age of 24 my eyes still see her as the picture I posted.  She is not of course and she is an incredible woman who I am so positive will have an incredible impact on so many.  But parents know that no matter the scenario, we see them so young.

I have sat down to write this quite a few times.  It seemed to get harder each time, and much of this story, will stay within our family but there were some things that I now know, and my family now knows that could help others.  So I will attempt, again, to get through this story.

It happened over the last few months. We did not want to share it until we were ready.  Today is such a day.  Only a very few knew what we going through at the time.  Kaitlyn was hospitalized.  Hell on earth came to visit…….again.

She is, or seems to be, fine; now.  Some blood work is still outstanding and some numbers from various blood tests are still askew but for the most part we are under the strong belief that she is getting stronger each day.

Kaitlyn is a stoic.  She rarely complains and for someone going into the medical field, she wants to know what is happening with her body at all times.  So it was with concern that she came to us weeks ago, after a few days of these ‘flu-like’ symptoms, and informed us that blood was passing out through her system.

Not good.

We went to the emergency room and she was admitted.  The next five days happened with such speed and, simultaneously, with such slowness that we were climbing the walls.  Ever had that feeling?  Her internal organs were swollen, every number that should not be high was off the charts and every number that should not be low dropped below dangerous.  The pain was incredible.  The fear was immeasurable.

All except her blood glucose levels….which through most of this; were fairly normal.  And THAT actually scared us more because now nothing made sense.  Imagine that?  Each day, as we progressed, I would call experts I know from around the globe trying to determine what all of this was about.  The first, and common thought was mononucleosis (mono), which seemed like the rational thought given the symptoms; but our medical team given the results, were unsure as to what was before them; what WAS clear was that this was not a ‘normal’ case of mono.

I lost count on how many tests were done. Sixty….seventy….who knew?  Kaitlyn was getting weaker.  We were getting more worried.  More tests were being ordered.  These were/are very good doctors.  Stony Brook University Medical Center is one of the best I know of for so many reasons.  It is also where Kaitlyn ‘grew up with diabetes’ and also did her undergraduate studies.  We KNOW this hospital.

And still, they poked, prodded, and scratched their heads as they grappled with each test that was returned……..levels still of concern….but no clear diagnosis.

She had four teams of doctors.  Each studying everything carefully.

It seems, in many cases, it’s a hospital protocol to remove an insulin pump in the ER.  Not so sure why this is, and I also am unsure if I have my facts exactly correct on this issue.  THAT was not going to happen with us and we came to a compromise that the insulin pump would remain but we would have to use the hospital-prescribed insulin.

Compromise.  The first and important lesson.  Listen carefully should you ever end up in the hospital.  They have reasons for rules and it’s not necessarily important that we know why they have some of them, but they do.  We heard what they said, and we told them our concern.  And we came to a course of action.  Even when it came to checking blood sugar, Kaitlyn wanted to use her meter because if you HAVE BEEN in a hospital you know that their lancet can be like a harpoon.  When Kaitlyn knew that it was THE METER that was important, she asked if she could use her own lancet but their meter; problem solved.  Listen and look for common ground.

You Make the Decisions.  All medical teams will evaluate and give you your options.  I cannot tell you how many hours were spent after we left the hospital trying to decipher what we were being told.  As we were given information, we felt it extremely important that her 4 teams conferred a little more frequently and they obliged.  It avoided mixed signals and helped us come up with a clear course of action.

Ask questions.  The decisions are yours to make and at one point in our scenario there was a discussion about surgery.  Asking questions, and them conferring, created a wait-and-see attitude that resulted in no surgery.

Take Notes.  You will never remember everything.  Write down what they tell you during your stay, and who said it.  When someone would come in and state something; we would refer to the notes and were not afraid to say, “Doctor XYZ stated this, how does that come into play with what you are now saying?”  It was explained so we understood, or it was agreed that Doctor XYZ would be in contact with Doctor ABC.  And when Doctor ABC came in, we were the first to ask if they heard from Doctor XYZ?  Notebook.  Take notes.  What was said and by whom.   All—-important

Listen.  To not only the professionals, but each other.  Kaitlyn’s opinion, and in many cases more-so than ours, was in the mix.  I’m convinced that our kids need to be part of what we feel we can tell them in a process like this.  You KNOW YOUR CHILD and how much or how little input that may be is your call.  But know this, they hear the nurses and people talking all around them….just KNOW THAT and remember that knowledge is power and helps eliminate fear.

Breath.  Seems like rhetoric, but it is not.  Get away. Cry. Pray. Breath.  Educate yourself.  Distract your emotions for some time; but accept your emotions when you need to.  Release is good and you will know when to do that best.

It was diagnosed that Kaitlyn was dealing with mono.  Apparently some think it was due to her diabetes that it hit so hard, but others have had mono without the same results—-so I guess it’s a crap shoot.  An Epstein Barr virus (which mono is) can play havoc, I am told.   I do not have all my answers yet, but I’m searching and will let you know what, if anything, I can find out.  She was released under the caveat that we would watch for anything that would derail, and would notify the medical team immediately.  A diagnosis, based on everything it was not; more than what it was.  She is back to work 7 weeks after it all started, the doctors feel it is okay. Tests results are getting better.  She is getting stronger toward her ‘ol self each day.

I leave you with this final note.  And yes, as I write it my eyes tear up.  One day when I went into Kaitlyn’s room I saw something that will stay with me forever.  It was the nurse supervisor sitting on a chair with her chin resting on her hands and her elbows resting on her knees.  Listening and watching.  Kaitlyn had her insulin pump in her hands and I stood to the outskirts of the hospital curtain and listened as the teachable moment for the professional was given by the patient.  She spoke in detail so there was a better understanding of this thing called an insulin pump.  The nurse thanked her for the information.

Later I would find an empty room and cry.  The patient became the teacher.  The one with diabetes would take a moment from her healing to help so others would benefit.  In this case, that patient who was in so much pain, was a young lady I find very, very special.

Later that evening, as I watched her sleep in a hospital bed, I was taken back 22 years to when she laid in a crib in the same hospital; and the promise was first given……I will not fully rest until we have done all we could.  People need to be educated, and I whispered the words again as I watched her sleep; “Daddy will not leave stone unturned honey, until a cure is found.”

Thank you for indulging a dad today.  A dad who wants what you want.  A Diabetesdad.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.