A Grandmother's Story - Chapter 1

My mom wants to share our story from her perspective, so she'll be guest blogging a series for us. She (Nanny) has been there for everything, even giving him his first bath after coming home from the hospital 21 years ago as a newborn (see picture), to staying with him in the hospital at diagnosis almost 5 years ago. I hope you enjoy her story!  

Early Friday morning August 24, 2012:

The phone was ringing.  Our daughter Cassie was calling to tell us that our 16 year old grandson, Seth, had been taken from the ER of the local hospital to Children’s Hospital in Dallas in ICU.

Seth had been diagnosed with Type 1 diabetes.

What should we do?  Come to the hospital?—(I hate Dallas traffic with a passion!)

Her answer was no, not just yet.  Only two people could be in the critical unit and she and Jason wanted to be with him.

We stayed in touch by phone throughout the day.  By late afternoon Seth was becoming stable.  He would remain in ICU for a couple of days and then move to a regular room.

School was to begin on Monday.  Cassie and Jason are both school teachers.

I could not imagine how school teachers could miss the first day of school.  What to do?

The only plan I could think of was to go to the hospital on Sunday so they could go home and prepare for the next day.

Saturday:

I called Cassie to tell her that her dad and I would come to the hospital Sunday and that I would spend the night at the hospital with Seth when he was moved to a regular room.  (I still hate the idea of Dallas traffic!)

Our son, who lives near us, agreed to take us to Dallas Sunday.

…But there was a problem.  In order for me to stay with Seth at the hospital I would have to come to a short “training session” with the nutritionist.

I agreed.

There was much to consider.  We were all aware that something was terribly wrong with Seth.

He was a summer life guard at the local swimming pool and was also a drummer in the high school band.  He was loosing weight and was tired from all the summer activities, especially with band practice in the evenings in this terrific Texas summer heat.

Seth had completed his Boy Scout Eagle project and his award ceremony had been on Sunday afternoon just five short days ago.  Seth was so thin and pale.  Another grandmother and I were shocked to see how bad he looked.  The Eagle ceremony was quite impressive, but all we could think about was how sick Seth was.

His dad called the doctor Monday.  Seth was misdiagnosed with mono.  We have been told that misdiagnosis is quite common and that even very good doctors make this mistake.

Sunday:

The nutritionist at Children’s Hospital was very thorough.  There would be a very strict diet to follow for the first month.  All food and insulin would be monitored and reported until a regimen could be established.

Finally, it was time for Seth to leave ICU and be transferred to a room.

Cassie and Jason left the hospital to make plans for the school day on Monday.

Our son took his dad home.

It was now just Seth and me in a hospital room with nurses and doctors to help us begin this new way of life.

It takes a few minutes to get situated in a hospital room.  Unpack a bag.  Figure out where to put your extra clothes and toothbrush.  Is there any way to make a bed in this room so I can stretch out for the night?

In comes a nurse.  We must select items from a menu for our evening meal.  There’s a list with carb counts and several pages of with menu selections, numbers and boxed to check.  Meat: ok.  Vegetables:  maybe. Fruit: you have to count the grapes and make it add up to the correct numbers.

Seth makes a few choices and I decide to choose from the same menu and add everything up—just for the practice.

In comes another nurse.  In order for me to leave the hospital with Seth tomorrow I must administer the insulin injection.

Are you kidding?  I don’t think I can do that!

However, I certainly did plan to take Seth with me when I left that hospital.  I took the syringe in hand, and with detailed instructions from the nurse, drew up the insulin and stuck that needle into Seth’s arm.

It’s amazing what you can do when you don’t have a choice!

Our meals are ordered, we have settled in the room (kinda), so what next?

My husband and I had toured the hospital and had seen the amazing train collection.  Seth said he felt like getting out of the room now.  I asked a nurse for a wheelchair so that we could go exploring.  The railroad display at Children’s Hospital is certainly a tour worth taking and Seth seemed to enjoy being able to get out of the room for a little while.

Back in the room, we had our supper (counted grapes and all), filled out the proper paper work and attempted to settle down for the night.  The nurses would take care of all the necessary blood checks, insulin injections, etc.  We don’t have to worry about that until tomorrow.

Sleep came restlessly, but did come.  Praise the LORD for a little rest.

Well, that was unexpected

12 days ago, the symptoms all started to make sense. Excessive thirst and urination, fatigue. You know the drill. So I decided to check my blood sugar. Whoa! Over 600? I seriously did not expect that! I went to the doctor the next day. The PA was the only one available and he totally blew me off! He had me diagnosed as type 2 before he ever walked in the room. He listened to NOTHING I was saying about my symptoms and their sudden onset. He didn't listen to my family history of no type 2, no gestational diabetes, none of that. I left with a blood sugar over 300 and no real treatment plan except to take some metformin and come back in a month. Yeah, like that will ever happen! Thankfully, we know how to take care of someone with type 1 diabetes in our house!

Today, I was finally able to see a doctor that listened. He spent almost an hour with me, asked about my symptoms and when they started, and listened to me! I left with a diagnosis of type 1 diabetes (maybe type 1.5?) pending results of the c peptide test.

So there you have it. 3 people with type 1 diabetes, all in the same house. This is going to be interesting. KDA x 3!

Snow Ice Cream

For the past 2 1/2 years, 2 cans of sweetened condensed milk have haunted me from the top shelf of my pantry.  You see, those 2 cans were bought before Seth's diagnosis, when we thought he had mono.  He was losing weight and we were making shakes trying to put some pounds back on.  I couldn't throw the cans away, but I didn't have an occasion to use them either.  So they just sat there on the top shelf of the pantry, bringing back those scary, sad memories.

Today, we turned the sad memory into a happy one.  It snowed quite a bit overnight, unusual for Texas and almost unheard of in March.  We set out some big bowls in the back yard last night, and this morning I made snow ice cream.  I used both cans of that sweetened condensed milk.  Yum!

And with that, I can open my pantry for the first time since diagnosis without thinking about diagnosis.

So many new diagnoses

I tried to write this a few weeks ago, but the emotions were so raw I couldn't even get it started.  For a period of a few days, everywhere I turned there was a new diagnosis.  The pharmacist's great nephew, a child my parents know from church, siblings of kids previously diagnosed, and parents of children with type 1.  Everywhere, both in real life and in the DOC.  Pair that with being around the time of Seth's diagnosis and it kinda made me a mess.
Since Seth's diaversary (anniversary of his diagnosis) there have been even more. A family in a nearby town is a new member of this terrible club. Their toddler was diagnosed last month. A facebook friend messaged me to pray for her friend's daughter, who is in a diabetic coma. She was just diagnosed last week and if I understood correctly has not come out of the coma yet.
Add to all that stories (and fake stories) of children dying in their sleep and because of being misdiagnosed and it has been a rough few weeks emotionally. It surrounds me, consumes me.
But through it all, we persevere. The stakes are too high to drop our guard. If I must be a member of this awful club, then I will be thankful that the other club members are really pretty awesome people. They are walking the same journey, experiencing many of the same things. They understand the trials, the emotions, the sleepless nights. What we really need is a cure. Until that day comes, I will continue to surround myself with others that are on the same journey. Together, we are stronger than we are alone. Together, we will KDA.

A year of firsts, a year of lasts

One year ago today, type 1 diabetes officially entered our life. This past year has been a year of firsts. It's almost like starting over. There was the first day of school, the first football game, the first overnight practice with his band, the first restaurant meal, the first time back at church, the first Halloween, Thanksgiving, Christmas, Valentine's Day, and Easter, the first birthday, the first day at work. Of course, he had done all of those things before, but not with diabetes.  Every experience with diabetes is brand new, as if they had never been done before.
We are now beginning a year of lasts that has nothing to do with diabetes.....last summer band rehearsal,  last summer assignments,  last first day of school, last pep rally, etc. Senior year officially begins on Monday. I know many parents are sad for their "babies" to be seniors, but I am not.  He is a senior, meaning he is still alive.  He is kicking diabetes' ass every day. Every day. Will I get misty-eyed throughout the year? Sure. Senior year is an emotional time for not only the seniors but also their parents. I intend to cherish every tear and enjoy every moment. One year later I am still grateful for every morning that he wakes up, every day he makes it until bedtime, and every "normal" moment in between.
We are trying to get to the place where diabetes only gets the minimum attention it requires. It doesn't rule our lives, it's just an annoying hitch hiker along for the ride. Today, we celebrate life by doing the things Seth loves to do: sleeping late, Endless Shrimp, and cake.  Tomorrow,  we go back to life as we know it. It really has become our new normal.

One year ago today

One year ago today, I knew very little about type 1 diabetes.

One year ago today, I had a very sick child. 

One year ago today, I was relieved when the doctor said it was a mono-like virus.

One year ago today, there were no finger sticks or shots a minimum of 4 times a day.

One year ago today, I went to bed at night without the fear of my child dying in the night from severe low blood sugar.

One year ago today, I didn't know just how strong my child is.

One year ago today, I had no idea how strong I am. 

One year ago today, we had no idea how much our lives would change in the next 48 hours.

I don't have a picture from one year ago today, but this one is close....one year and 3 days ago,  when we first really noticed how sick he was.