And then everything changed

My Boy

I logged in today to write this are realized that it has been over a month since I have been on here.  And what a month it has been.  In some ways it feels like an eternity and in some ways it feels like the blink of an eye.  But the reality of it is, on May 20th, the lives of our whole family changed forever.  And for better or worse, there is no going back.

Things really started before that.  Around the middle of May, my husband and I noticed that our son was drinking a lot of water and started to wake up wet – like change the sheets because the diaper just wasn’t holding all the “wet”.  The little voice in my head reminded me of the diagnosis of our diabetic dog, but no, it has been hot.  He is just thirsty.  No need to panic.

We waited a couple of weeks and he continued to drink a lot of water, so, on Friday, May 17th, I called the doctor.  “Maybe he’s eating salty food.  Maybe he’s just thirsty.  Write down what he eats and drinks and call me on Monday.”  So the weekend began.  My husband actually had the weekend off because he was suppose to travel for work the following week (leaving super early Tuesday morning).  I think I only told a couple people we were tracking his food and water because I didn’t want to look silly when it turned out to be nothing.

Monday morning came and my daughter went off to school and I went of to PT for my back (another long story).  I came home to my inconsolable son and my tired husband who said he had been acting that way all morning.  So I called the doctor back and told them he had been drinking 35-40 ounces of liquid a day all weekend (keep in mind, he is 2 years old and 29 lbs).  She told me to bring him in and the on call nurse would give him a quick finger prick just to make sure.

So, I packed up my little boy (hubby had to stay behind to pick up sister at school) and went to the doctor.  When I arrived, some random nurse I have never seen before ushered us in to some random room to do a quick finger prick and send Z and his paranoid Mom on their way.  I will never forget that moment, when the reading came up on the meter that said “HI”.  How high to you have to be to not even register on the meter?  The nurse says “uhh, I need to go talk to your nurse and see what she wants to do.”  Yes, yes you do, because we are not just being sent on our way.

At this point, we had to see the doctor.  The doctor who delivered Z and has seen him his whole life.  The doctor who was actually my babysitter when I was his age.  She had to tell me, we think your son is diabetic.  They needed an actual reading so we needed to get blood drawn.  The second part of the visit I will never forget – “If your son is over 600, he will have to be admitted to the emergency room.”  It was at that point I realized how serious it was.  We walked down the hall for the blood draw and headed home to wait.

At 1:30 we received a call from our nurse.  Z was at a 553 (For those not familiar with blood glucose readings, normal for a child is between 70 and 130).  While he didn’t need to be admitted to the ER, we needed to see a pediatrician immediately.  How soon could we be there?  45 minutes I told her.  We packed some activities to keep the kids busy and packed them up in the car and headed to another doctor for the actual diagnosis.

I don’t remember much of that second appointment, or the days that followed.  Z is a Type 1 Diabetic.  That means that he has an autoimmune disorder where his body attacks his pancreas and he can no long produce his own insulin.  That means he will receive insulin by injection every day for the rest of his life.  That means he will die if he doesn’t.

Over the next 24 hours my husband, who was no long going on his work trip, the kids, and I travelled 2 hours to see a pediatric specialist and learn how our life would change forever.  We learned to check blood glucose levels.  We learned to give shots.  We learned to count carbs and we learned to calculate insulin doses.  I learned how to give my son an emergency injection if he went into hypoglycemic shock and was unconscious, having seizures and couldn’t ingest sugar.

A month later I am still learning how to count carbs and calculate doses.  I am terrified to leave my son with anyone but immediate family, even if I am right down the hall.  My husband and I get up at 2 am every night to check Z’s blood glucose, and many times to feed him so his numbers won’t get to low before morning.  I pray if they do he will cry out so that I know to go in there to help him.  We bought him a big boy bed, because when his numbers are really uncooperative, I sleep in there with him so I will know if he starts having seizures.  I don’t sleep much.  Ever.

Z’s older sister doesn’t sleep much either.  She is scared but doesn’t totally know why.  She knows something is wrong with her brother.  She knows I am scared.  She is scared she will get it.  I don’t have the heart to tell her that there is a 1 in 20 chance that she will but maybe since she got the food issue, God will let her skip the Diabetes issue.  But doctors are seeing a high correlation between celiac (although we aren’t positive she has it) and Type 1 diabetes.  A fair number of kids get both.  I did tell her it isn’t like a cold though.  She can’t catch it from germs from Z.  That helped.  Mainly she misses our carefree time together.  Its hard when your brother gets so much attention.

And Z does get a lot of attention.  We check his blood glucose at least 6 times a day.  He receives 4 insulin injections every day.  And needless to say, I hold him a little closer than I used to.  Chances are, he will grow up to be a normal healthy young man.  Diabetes is very manageable, but it is a lot of work.

Mainly though, the last month has taught me just how precious my family is.  I always knew I loved my kids and that I would do anything for them.  Now, I REALLY know.  The irritate me less and I see just how amazing and precious they are in everything they do.  Suddenly, nothing else matters but those 2 kids.  I am thankful for my husband because there is no way I could do this alone.  He is my rock when I am terrified and wonder if things really will be alright.  I know that as a family, we will make it through this together.

Z checking sugar

7 comments

  1. Scott Hammond says:

    No words, just

  2. Scott Hammond says:

    supposed to be hugs inside brackets, but they didn’t show up. so sorry, Jessi. Hang in there.

  3. Wendy "Eudora" Droke says:

    Jessi my heart hurts for you… I can’t imagine what you are going through. My prayers are with you that you would find peace and rest in the midst of all this…you are an amazing mommy!

  4. Kelly says:

    Jessi- My heart aches for you and your pain. I know this pain because your story is so similiar to our story 9 months ago with my daughter’s T1D dx. I also hug my kids closer and sleep less. The hardest part is the daily struggle and the constant variables. But what I can tell you is that the window does open a bit further each day, week, month. We were where you are and how it feels unbearable and now we just sent our child today to a day camp on her own and she was the only T1D – and she did great! There are always milestones in children’s lives and now you have some more to reach for. But I will tell you that when you have a good milestone – it is so sweet! Good luck and make sure to give your hubby hug and appreciate each other and all you do. You are doing awesome!

  5. barbara Edwards says:

    Thank you for sharing – it is good to share because you are not alone. Your family will always be
    there for you and for your beautiful courageous family. Zach is lucky to have a family that recognized
    what was going on with him and will provide him the care he needs. He was, is, and will always be
    the great person he was, is and will be. We love you all dearly – please keep letting us know how you are doing because we truly care. Love, aunty B

  6. Mary says:

    I feel your pain and remember the struggles of the first few months. Adjusting to new norms is hard. We had a 3 month old when our 3 yr old was dxd and I felt so guilty so many times when I had to let my new baby cry so I could deal with a bg check and or juice a low. There were many times that i just cried along with him but we grow and things become somewhat normal again. Hugs!

  7. Kristin says:

    Sorry you’ve had to join the club, but I’m so glad your nurse and doctor were proactive! (Our son was dx’ed at 14 months in full DKA.) It definitely gets easier, and other people (parents, adult PWDs, kids, researchers, bloggers, etc.) are the silver lining. So glad Chris shared your blog on POKED! It’s one of many fantastic groups of people. Hang in there!

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