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’.


10 replies on “A Painful Event, Tears….and a Few Lessons to Share….My Little Girl.”

We went through a similar scenario with our dd, now age 25, when she was away at university in nursing school. She had the same diagnosis. Now, an RN with a BSN, she works on the med/surg floor of a hospital. She has related how “uneducated” her co-workers are about diabetes in general much less on the pump and everything that goes with T1D. She is well respected and has educated many, including doctors who were going about certain things entirely wrong. Now, some consult her for advice before dispensing orders. Glad your daughter is better!

Thanks for the good wishes and she will be heading down the same course as your DD as she too will be seeking an RN BSN—to eventually a nurse practitioner…..maybe they can start a practice.

Our dd is considering nurse practitioner, as well. She actually turned down what she thought was her dream nursing position on the “diabetes floor” at our local Children’s Hospital because it was going to cut into her volunteer time. (They were much more restrictive on scheduling around camp schedules and said she could only work one diabetes camp every two years!) For now, she does much, much volunteer work with our local diabetes camp and church. In fact, as I type, she is in Kenya on a medical mission, her third mission in since May 2013. By the end of the year, she will’ve worked a dozen diabetes camps in fifteen months. Ah–the single life. I’m sure this will change when she settles down. We are very proud of her and what she does to support and educate T1D families. She was shocked to be told she is being recognized later this month as an honoree at the National Philantropy Day Luncheon. I know in biased, but I think that’s a hefty accomplishment for a 25yo. I know your dd will be just as active. So many of our T1D kids train for the medical field!!! Their first-hand experience is definitely needed. And, yes, maybe they will partner up. 😉 I have a feeling they’d be UNSTOPPABLE!

As always, Tom, when I read your words, I find myself nodding with each word in every sentence. So many of us that are parents of children with T1 (and yes, even though my daughter will be 21 next week, she is still in my eyes that child she was at 10 when she was diagnosed.) understand and feel the emotions you feel when you are writing. My daughter had Mono three years ago and it knocked her off her game for several weeks. I am glad to hear your daughter is “just about” back to normal and life will go on. Our children are resilient, determined and strong in ways I never could have been. Thank you for your story today.

So glad to hear your daughter is on the mend. You gave great advice, and I love the story about Kaitlyn educating the nurse! My 21 yr old T1 usually doesn’t like to go into details…

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