I wanted this blog to be about my family's experience with my son's Type 1 Diabetes. My family is more than just diabetes, but I want this blog to be focused on how it affects our family. I hope other T1D parents find it helpful, and that my family and friends find it informative.

Tuesday, March 13, 2012

What a difference a week makes

Life is wonderful.

But my world is different than it was 7 days ago... still wonderful but different.

(This is a long entry... after all... it is 7 days)

7 days ago-  As I was driving my son to his Mother's Day Out program I noticed in the rear view mirror that he was staring off into space... very distant.  I figure, "its early... I had to wake him up... he didn't eat much breakfast... the car is soothing."  We arrive and walk into his classroom.  He seems very upset to be there, which is completely unlike is normal behavior.  I decide to take him back home, after all it is flu season, maybe he is at the very beginning of the flu before typical symptoms kick in.  I also realize he has been sleeping a lot... "Yes, he is going to get the flu," I think.
At home he spends the day watching cartoons on the couch.  He doesn't eat much, and takes 2 naps. 
However, he never gets sick and he never gets a fever.  After naps he wakes up and plays before settling back down on the couch for more cartoons.  He also goes to bed extremely fussy an hour before usual time.

6 days ago-  My little man wakes up as usual, and joins us downstairs.  He asks for juice like every other morning and watches a cartoon while I straighten up the house and see my husband off to work.  When he is out the door I decide to sit with Johny since he obviously isn't feeling well.  He cuddles up to me and falls asleep.  Yes he fell back asleep after being awake for about 90 minutes. 
I decide to take him in to his pediatrician.  About 2 hours later we arrive.  His doctors office is right next to my business that my husband runs so I pop in and steal him away to come with us.  I know I am going to ask for a blood panel and don't think I can hold Johnny while they draw blood.  I don't know what in my gut tells me to have blood taken.  As a mother I just know he doesn't look right, grey sunken eyes, purplish splotchy skin, my chunky monkey's ribs and spine started showing, extra sleepy... I guess that is why I wanted blood work done.  Withing minutes of getting into the exam room with the nurse the doctor runs in and yells for a nebulizer.  By now Johnny's lips are blue/purple and he is awake but not there.  He is weak and floppy.  To my doctors surprise his blood oxygen levels are fine and his lungs are clear.  After further examination they question me about Johnny's access to Tylenol.  I get defensive instantly!  Of course I keep drugs out of reach of Johnny!  Then it hits me, I just had a tooth removed a week or 2 prior and had it on my night stand.  I can't remember if I put it away.  OMG, I did this to him!  After checking his oxygen level again our doctor tells us to drive him straight to the Emergency Room of Children's Medical Center of Dallas.  They told us not to stop back at the house and not to stop in any drive-thrus just go straight there.  I thought this was strange since we pass multiple hospitals to get to Children's, but off we go.  Johnny falls asleep again in the car.  We get settled in the ER and start the process of getting IVs in a 2 year old.  After about 30 minutes of tears and struggle IV ports are in and Johnny is back asleep in Daddy's arms. 
Less than an hour goes by.  The doctors come in and I just know they are going to tell me its a Tylenol overdose.  I know social services is going to come and interrogate me and think of me as one of those bad parents.  I wonder if my husband will blame me too, I wonder what his family will think of me, I wonder if my mommy friends will judge me.  Then I wonder if they will take him away from me!  I am crying hard.  I brace myself for the news that I poisoned my child. Then they give us the news....
His blood glucose is over 400.  It means nothing to me.  Even though I know that it should be around 150... I am still waiting for them to tell me that is a sign of Tylenol poisoning.  They continue on, we are going to run some more test but it is a pretty clear case of Type 1 Diabetes, aka Juvenile Diabetes.  My husband and I are in shock.  My dad has type 2 diabetes, so I am a little familiar.  I cry harder.  "Is this our fault?" I ask.  They explain that unlike type 2, type 1 is an autoimmune disease.  Our son's body attacked its pancreas and will no longer produce insulin.  They also tell me that there was nothing I could have done cause it or prevent it.  I have about 10 seconds of relief that is isn't my fault.  Then memories of kids with diabetes I grew up with flash in my mind.  They had to leave class for shots, they didn't attend field trips, they couldn't have the cupcakes parents brought in for birthday parties... we all knew they were "weird."  They explain things like Ketones, how Johnny has a lot of them, how they affect the body, and just how sick he is.  They transfer us to the ICU. 
The ICU was a sad place to be.  No happy parents in there. Walking to his room, I would look in at the other rooms and turn away.  Kids with tubes hooked up to machines.  Parents in hospital scrubs and face masks hovering over their child... I didn't look into other rooms again.  Johnny was sleeping now.  My husband and I have a little couch in his room to sit and gather our thoughts.  We are grateful.  We are grateful that Diabetes is treatable, that Johnny will be able to go home and live life.  We decide not to dwell on what living with Diabetes means for now, but to just focus on how lucky we are and how many parents would trade places with us in a heart beat.  The rest of the night goes by in a blurr.  Testing each hour, lots of information, grandparents visit, husband goes home to pack me a bag, more family is called, friends start messaging with support... before I know it the day is over, I don't know how but I have to try to sleep.  I am pregnant after all, Johnny is asleep, its late.  The hours go by, and each hour he is poked and checked and I am updated. 
5 days ago- By morning, I have a total of 2 hours of sleep under my belt but it doesn't matter.  Johnny did so good over night that they are going to let him eat breakfast! 
My husband arrives that morning and that inspires Johnny to play with a few toys on his bed.  I couldn't be more grateful for my husband than I am at that moment.  To see my baby with tubes in both arms and hands play with a tiny plastic dinosaur fills my heart and I know he is going to be okay. 
A little while later, Johnny gets a special delivery from Aunt Carol, Mimi, and Papa.  5 balloons attached to a stuffed horse!  I actually was surprised to see how happy it made him.  He was thrilled and so was I.
At some point that day we were transferred to the Endocrinology floor of the hospital where our real exposure to diabetes began.  They took him off his IV of insulin and switched us to shots.  There was lots of education for Mom and Dad about carb counting, injections, dosages, schedules, and so on.  But the best part was when Johnny wanted to get out of bed and go for a walk (and take his horse and balloons). 
4 days ago- We seem to be in the clear.  Ketones are reduced but not clear so an IV of fluids stays in.  Johnny has learned that he does like grilled chicken, sugar free jello, and crystal light. 
As parents we start practicing checking his Blood Sugar and injections.  Neither goes very well.  He has to be held down by parent 1 while parent 2 does the test or injection.  We are frazzled, he is frustrated.  Johnny is asking for food every 5 minutes.  He eats his meals and 5 minutes later wants more.  He is upset that unlike before we have to tell him to wait.  As parents we are trying to hold on to all that we are grateful for.  We are telling each other how it is going to get better, even though neither of us believes it when we say it.  We are going over future events in fine detail, like we have to figure it out that day.  "Trick or Treating, sleepovers, camping, boy scouts, holidays with family, travel, day care, school, college"... the list is endless.  After hours of discussing ideas, we say we will deal with each as we get to them.  Grandma comes and sits with Johnny in his room so Mommy and Daddy can have a meal together in the cafeteria. 

3 days ago- Mommy is a mess.  Maybe it is the lack of sleep.  Maybe it is the pregnancy hormones.  Maybe it is that my perfect baby now has a life long disease that will separate him from his peers and make him feel different.  Maybe it is that deep down I wonder if it is because I was obese and pregnant with him.  It doesn't matter what the doctors tell me, I live an unhealthy life style and I wonder how long it will take science to realize that it is my fault, that I did this to him.  I wonder if I have already set Jocelyn up for the same fate.  I wonder if we should stop having children.  However, today is the day we are going home.  Johnny has cleared his ketones, he is off his IVs.  Mommy and Daddy know how to draw up and give insulin.  We know our new schedule, we can do it alone.  After a $170 copay visit to the pharmacy (didn't get everything) we head home for dinner.  Johnny is constantly asking for food.  It breaks my heart to hear my baby tell me he is hungry.  I guess his body has been starving for at least a week but most likely longer.  I tell my husband that the doctors said to feed him like normal, there isn't anything off limits at meal times, we are just supposed to dose him accordingly.  So I make my baby's favorite, cheese pizza.  I also cut him up some strawberries and give him milk.  When he asks for his 3rd slice my husband says no and to eat his strawberries.  This began world war 3 in our house.  My husband doesn't feel we should throw all parenting out the window for diabetes (he is right).  I feel its his first day home and he is starving literally and let him fill up so he stops begging and crying for food (I am right).  We actually lose it and yell at the table in front of Johnny.  Johnny has to stop us, he yells "stop it guys, stop yelling!" OMG, bad parents of the year award.  He knows exactly what we are yelling about and asks for something other than pizza.  I however do not want to get up and make something else just cause so I give him the 3rd slice... and another 1/2 after that.  Later John and I resolve our issues.  We are both struggling with this in different ways.  I want to nurture and comfort. John wants to treat him normal like he is no different.  In the end, we both just want him to be happy and feel loved.

2 days ago- Bad day.  Constant hunger.  Constant asking for food. 
Constant high blood sugar readings.  Both parents are on edge.  Johnny has had it with his new rules and routine.  He doesn't want to be poked.  He doesn't want a shot.  He doesn't want to eat chicken or jello.  He doesn't want to wait for crackers until it's snack time.  He doesn't want to lose control of anything else in his life.  Its a bad day full of tears from him and mommy in private.  At bedtime, he doesn't want the bath or the shampooing of the hair, and when its all over he sits in my arms, wet and whimpering for 10 full minutes.  He has had it, he doesn't want to have diabetes and I don't blame him.

1 day ago- Something changed in just one day.  At lunch time Johnny actually told my husband which finger to poke to check his sugar.  He counted to 3 for us, said "ouch, all done!"  He seemed to go longer without asking for more food.  He seemed to understand that waiting didn't mean no.  At dinner not only did he repeat his bravery with checking his sugar, he also came over to me after and told me where to give his shot and held still with out tears for the injection.  What a good sport!  My husband also got a hold of our doctor about the high numbers all weekend and the constant hunger and they changed our ratio for 2 of his 3 meals.  I would never have guessed the day before that this day would have gone so well and smoothly!

Let me say it again, my world is still wonderful.  It is different but wonderful.  I have my baby at home with me.  There is treatment.  He will be able to do anything in life.  When I start getting depressed I have to remind myself that is selfish, this is Johnny's disease and it is just my job to lift him up and be there for him.  He doesn't want me to be depressed, he doesn't deserve a sad mom ever!  Today is my birthday.  I have everything I want and it is a great day.


  1. Thank you so much for filling us in on your life. Whew! What a crazy week. I love how positive you're being. That will help Johnny more than anything else! Be sure to let us know how we can help.

  2. Im so very proud of you Jaime,and John and little Johnny Yall are all troopers and that little man has the best of the best parents in his life!

  3. I had tears throughout this - your writting so greatly expressed your emotion (the emotion of any mother) and I felt it with you. XOXO