Wednesday, August 11, 2010

OHSU Here we come again...... Conor's Diabetic appointment & story

I thought I would tell Conor's story today  his story of when he was diagnosed with Diabetes and how his life has been since.   Conor had just turned six years old and was in Kindergarten and enjoying school.
Then end of December he once again came down with Croup and was treated with steroids, Conor got Croup every few months since the age of one and was regularly treated with steroids to help him.  His croup was the scary kind, the kind that he wakes up in the middle of the night gasping for air and can't breathe and then we rush him to the ER.   So it was nothing new, another round of steroids.....  Then the bed wetting started ( which to that day he had never wet the bed), and it continued no matter what we did to prevent it.  Then he was always hungry and always thirsty but when you weighed him on the scale he was losing weight.  It didn't make since, so I made an appointment to talk to the doctor about it.  Two days before his appointment we found out that Steve's grandma passed away and that her funeral was to be on the day we had Conor's appointment for, so I moved it to the next week.   Steve's grandma's name was Bernice and she lived with Type 1 diabetes for most of her life.   She was a nice lady that had  lots of love to give,  I personally think that she was meant to never know that her great grandson inherited this disease.  Steve grew up seeing first hand the care that diabetes required, meals at certain times, blood sugar checks multiple times a day, and lots of shots.  Shortly after I met Steve she had one of her legs amputated because of the disease.  So we attended the funeral mourned her death and then returned home.  The next week the appointment came, at the back of my mind I knew, but I kept telling myself that I was wrong.  The doctor listened carefully as we explained all of Conor's symptoms, he nodded his head, he knew.   He sent us upstairs for blood work and told us to return after we were done.   So we did, and returned to the waiting area, hoping that we were going to be sent home shortly.   I spotted our doctor down the hall, I seen him take a deep breath before he stepped towards us and I seen from the lack of eye contact that it wasn't good news.   He brought us back to a room and he gently told us that Conor had type 1 diabetes.   He let us know that it wasn't a death sentence that Conor would live a normal life, do the same things other kids did.
He told us that the next day we needed to head up to OHSU for a three day stay to get educated.  So we left that office in shock and disbelief, I made it to the car and then I lost it.  I cried and cried and cried.   All I could image was that we were going to have to stick my baby with needles, needles that I imaged being twice the size they really were.  My poor little boy had no idea what was to come in the next few days.   We arrived up at OHSU the next day and were given a nice room large enough for both me & Steve to sleep in with Conor.   Conor was given all kinds of attention, given video games to play, pictures to color, and all kinds of stuffed animals.   And then it came time to start the dirty work, we had to check his blood sugar.   Conor was deathly afraid of seeing blood and even more afraid of his blood, so sticking him on his finger and squeezing his blood out was let's just say traumatizing....  And then we learned we had to do this every time he ate, and on top of that give him a shot too.   He had to be restrained those first few days and it broke my heart to see him so terrified.  Two days later we returned home, to a new life, a life that revolved around meal times planned out to the very minute, food measured precisely and lots of needle sticks.   It was amazing how strong he was and how fast he adapted.  The next week he was ready to go back to school and see his friends.  We were so blessed to have a wonderful nurse who spent hours every week with Conor that year in school and who made frequent calls to us at work.

Now fast forward 5 years....... And here we stand today.  I have a healthy 11 year old boy, who has let nothing or no one tell him that he can't do what he sets his mind to.  He's an athlete and enjoys playing every sport, he's also smart, funny, and a great big brother.     Yeah living the last 5 years with diabetes has had it's ups and it's downs but I think we've learned over the years not to let it control his life.  

So our appointment today was about taking it to the next step, getting a pump.   A pump that would help him get more precise blood sugar numbers and let him have even more flexibility in his eating.  It was hard on him, they quizzed him on carb ratios, correction factors, carb counts.  At the end of the appointment it was time for him to try on a catheter to see if he would be able to wear it.   He tried to stay strong, but he was scared, scared because it was something new, scared it was going to hurt, just scared....  After  lots of talking he went through with it and is now wearing the catheter which he will wear for the next three days.
We will have a rough few months ahead preparing for the pump, but in the end I think it will be the best thing for him.     I'm SO proud of you Conor!!!!!

2 comments:

  1. The pump is AMAZING!! I am also a Type I Diabetic. I have been on the pump for almost 15 yrs and it has given me back my freedom. Not to say that it was easy at first. I wanted to take the pump and throw it in the trash. But after a month or two when I got regulated on it and learned how to do things myself.... so liberating. If you told me now that you would take my pump from me.... you better RUN!
    I can only imagine though what Conor is feeling, I was in my late 30's when I finally got my pump and better able to handle the emotions. I am also a Physician Assistant so I better understand how all the carbs and insulin ratios etc work. But just know... it will get better, he will get used to this thing attached to him and he will LOVE the freedom! No worries about missed meals or the exact timing of a meal!
    If you ever have ANY questions about the pump, the emotions that go with being attached to it or ANYTHING, please e-mail me. I found your blog through Donna (Ella's Mommy) and she can vouch for me. :)
    Will keep Conor and your family in our prayers.
    Blessings!

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  2. Sandy rocks and is wonderful, i have her email if you want it! Anyway, Wishing him Luck and i am sure with you and steve as parents you will have it all figured out in NO time!

    hugs
    Donna

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