Friday, March 19, 2010

A Month Ago I Didn't Know...

A month ago I didn't know hardly anything about Type 1 diabetes. I didn't know that it would put our healthy, active, intelligent, amazing boy in the hospital fighting for his life a mere thirty four days before his thirteenth birthday. I didn't know how grateful I would be for a diabetes diagnosis, grateful it was something we could educate ourselves and learn to manage. Grateful that we had so much support and love from the hospital staff, our family and friends, and from other patients and their families in the ICU, who gave us insight and a perspective that made our diagnosis much easier to cope with.

I didn't know that he had every sign of diabetes for the two weeks previous to ending up in ICU. Hungry all the time, thirsty, frequent bathroom visits, less energy, leg cramps, heartburn, more stressed. Of course he's hungry- he's grown two inches in six months; of course he's thirsty-he's finally drinking water the way we have drilled into him for the last ten years; of course he's peeing a lot- he's finally drinking!; of course he's tired- remember he grew two inches in six months! The little voice in my head (my instinct, my internal wisdom, the voice I tell all my clients to never ignore) kept saying... "there is more to this... something is wrong..." Instead I scheduled an appointment for him when we got back from our trip. Three days before ICU, I even told my husband and best friend that T had signs of diabetes, but dismissed it because the idea seemed, for lack of better words, absolutely absurd. Not our family, not our son.

Two days before he became so seriously sick he took his second degree brown belt Shotokan Karate belt test and passed with flying colors. The next day he was tired. It made sense, he had worked hard. The next Monday he went to school, although he looked exhausted. We had planned on leaving that day for a business trip with the family. I picked him up from school and knew that the trip wasn't going to happen. Something was wrong. He looked gaunt, skeletal, anorexic. He said he was tired and his legs hurt. He had heartburn, and a stomach ache. He smelled strange, although it took me a while to recognize the smell. Like super ripe fruit-right before it goes bad. I attend women in labor and happen to be one of the people with a genetic ability to smell ketones. I have smelled ketones on pregnant women with diabetes and on women in labor. I didn't connect the smell to T until we were at the ER. Then it all made sense.

DKA hit T hard. Diabetic Ketone Acidosis is a condition where high blood sugars create a serious chemical imbalance of the blood. The body's pH becomes eschew; creating a host of serious potential complications, including seizures, heart rhythm issues, brain swelling, coma, and yes, sometimes death. T's blood chemistry values looked pretty bad, his doctors and nurses were shocked he wasn't in much worse shape. His body was strong and did a lot of compensating for his condition. It took three days in ICU and two and a half days on an insulin drip with constant fluid replacement changes to get him stable.

An A1C is a blood test that measures the average blood sugar in a diabetic for the last three months. T's was 14. Yep, 14. Ideal is 6.5 to 7.5 for his age. The scale doen't even go past 14. His average blood sugar had been over 400 for the last few months. "Normal" is between 80-180. At least we have lots of room for improvement!

In the meantime, we became students of diabetes. Learning, questioning, drilling educators, doctors, nurses and the occasional stranger in the cafeteria, elevator and hallways. The more I knew, the less scared and out of control I felt. The more I knew, the better I felt. The more I knew, the better we could cope and the sooner we could go home to adjust to our new normal life.

The diabetes learning curve is steep and demanding. Carb counting, blood work deciphering, short acting, medium acting and long acting insulins, blood glucose meters, insulin adjustments, syringes, insulin pens, insulin resistance, highs , lows, rescues and recoveries, honeymoon periods... the list goes on and on. Then you take all that you learn and try to apply it to a human being that is never static and always changing. Emotions, puberty, sleep patterns, food processing and hell, lately blinking seem to change everything we have just figured out.

We are home and honeymooning. T is gaining back the 15 or so pounds he lost. Insulin doses are dropping dramatically and sugar consumption is rising dramatically. Lows, lows and more lows. I am sure as soon as we figure it out-it will change!

A month ago I took for granted how mature, brave and wise our son is. I didn't know how supportive, and brave his siblings are. I didn't really know who I could depend on among my family and friends when life throws an unexpected obstacle our way. I didn't know how profoundly, we as a family have touched the lives of those we love. I didn't know how grateful I could be to the people that have supported us and loved us through this time. I didn't know the depth of worry and love we could have as parents for our children. I didn't know that a T1 diagnosis would introduce us to a whole new community of warm, loving, supportive people we never would have otherwise met. A month ago I didn't know I had room for one more cause in my life... now I do.

20 comments:

  1. Welcom April!! I am so glad you began to blog! It is a wonderful outlet for sure. I have many friends that are mothers of diabetics, we support and listen and laugh through our blogs. With your permission I would like to add you to my bloglist and introduce you to them. :)

    I'm excited to get to know you all better!
    Hooray for blogging!

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  2. Welcome to the blogging world April. Meri is right there are so many D-moms and D-dads that are all here to support you. They are truly amazing friends and have helped/supported me so much. My daughter was diagnosed on June 12th, 2007 at the age of two. It's nice to meet you.

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  3. Welcome April!

    My daughter, Avery, was diagnosed April 27, 2009 just after turning 3. You can read more about us at BitterSweet - www.faithhopecure.blogspot.com

    It's a rough road - but the amazing women and men you meet here will become a new "family" and will be there to support you through the ups and downs of the D life.

    If you're on facebook - look me up!
    Nice to 'meet' you!

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  4. HOLLA!!!!!!

    I nursed 3 babies for a total of 6 years...it meant that I tandem nursed my younger 2 for a year :) (GASP! I know!!!) Those 6 years will be close to my heart forever.

    I was also a certified doula through DONA. I say "was" because diabetes came along...and finding on call childcare for my young child who required finger pokes, carb counting, and insulin shots was impossible.

    She was dx in 2005 - it'll be 5 years this July. She was 24 months then...and she's almost 7 now.

    I miss it. But I still get my fix whenever I can with friends who will let me in :)

    Your post is beautiful. And it rings so true. Welcome. We are all mothers ready to embrace you and journey alongside you.

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  5. Hi april My name is cathy and welcome aboard I have a son who is 25 and he is a t1 and has been since he was 6 . I am also a t1 and am 49 and have been one since I was 16 . we are a force to be reckoned with us d moms !!

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  6. Hi April,

    My name is Joanne and I am Mom to 2 year old Elise (dx at 12 months). You can find me at http://www.deathofapancreas.com/ I'm sure you know this already, but you are blessed and LUCKY to have Meri close by... I'm jealous! She is all kinds of awesome (I know because I got to meet her in December)!

    Looking forward to learning more about you and your family. Is it okay for me to add your blog to my list?

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  7. Hi April. That was so beautifully written. I could so identify with you about being in denial, even though you knew the symptoms were there. A few hours before my daughter's diagnosis last year someone told me, "She has the symptoms of diabetes," and I thought, "Well yeah, but obviously that's not it..." We are at extrasweetgirl.blogspot.com
    Good luck!

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  8. Hi April!
    Welcome!
    I look forward to getting to you know you and your family!

    The denial thing... Oh yeah... can so relate.
    And you are right - D is constantly changing - it will keep you on your toes until you just have to sit down and breathe. Thats where your blog comes in. And we will all sit down and breathe with you. Then you will get back out there dancing. And we will celebrate that with you.

    Again - welcome! =)

    http://azmotheroftwins.blogspot.com/

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  9. Welcome April,

    I'm Heidi. My son was diagnosed in 2007 at age four. I blog at www.jacks-pack.blogspot.com. I look forward to reading your blog and getting to know you.

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  10. Hi April, my name is Lora. My son Justin was dx in 2008 at the age of 7. I LOVE your last paragraph. It is so true!
    I also love the new friendships that I have found through this community. Crappy reason for sure... but great group non the less :)

    Hope you come visit me at mydiabeticchild.blogspot.com
    Cant wait to get to know you.

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  11. Hi April and welcome to our D-Momma club that no one ever really WANTS to join!
    I'm Chasiti and my 3 1/2 year old daughter Alivia was dx in May of 2009 when she was 2 1/2.

    Our blog is AjsMommy82.blogspot.com

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  12. Words fail me at the moment. Thank you all. I am overwhelmed. I am still figuring out how to navigate blog world and haven't figured out how to message everyone that commented. I am technically challenged, so bear with me! I am so excited to get to know everyone and have enjoyed reading all of your blogs. I have learned so much all ready! Thank you all for letting me vent. Love to you all. You can find me on FB at April Durham, in Petaluma CA.

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  13. Hi April Ann! and WELCOME.

    Your post rings so true...the ICU stay...I was a Pediatric ICU nurse for 13 years. I remember recovering children in DKA...funny thing is, I too was in denial about my son, Joe...he was eating all the time, drinking ALL the time..and had extremely heavy diapers the week prior to diagnosis...Joe was diagnosed 3 and 1/2 years ago when he was 3 years old. It has been like roller blading on a mountain ridge...we fall...we get up, dust ourselves off...and start skating again. It is a wild ride and I am glad to be on it with you and all these amazing families.

    My name is Reyna. I live in Vermont. I am at betabuddies.blogspot.com

    I hope you have a great weekend!

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  14. Hi April,
    What a story! Welcome to the club we never wanted to join. Amazing moms and dads here. Glad you are here, sorry for your son's diagnosis. We all feel the same way.

    My gal was 6 when she was diagnosed in January 2009. She is 7 1/2 now. Yep, steep learning curve. Is your head swimming from it all? It gets better - the learning, the adapting. It's a new normal.

    These gals are among the greatest you will meet in D-Mom blogging land. Glad you joined us.

    Take care, be well, share your story and again, welcome.
    Penny
    asweetgrace.blogspot.com

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  15. Hello April, like Penny said welcome to the club and I'm glad that you have found us. I'm sooo grateful for meeting all these amazing people all going through thing that you are or will be going through. It really is an amazing support!!

    My daughter Cara was 3 when she was dx T1 Feb 13 09. You can find us at www.wecaralot.blogspot.com

    We are Canadian so our BG #'s are a bit different but if you multiply my BG # by 18 you will find a number that you can relate too :)

    Good luck in your journey and I will be looking forward to reading more about you and your family!

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  16. Hi April! Sorry I am late making my way over to your blog --- thank you for visiting mine and for your kind words.

    I am sorry you have been forced into the world of D but look forward to getting to know you and supporting you!!

    Nate was dx in Sept 09 at 14 months.

    Chat soon!

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  17. Hi April,

    Thank you for sharing your story. I look forward to following along. It's so fantastic you have found Meri and all these great women. You are not alone in this.

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  18. Welcome aboard the D Train. Wish like heck you didn't have to be here, but we're all glad to have you anyway. I've just recently discovered a virtual flock of blogging D moms out there, so there's lots of support. And, hay, blogging is way cheaper than therapy :) Hang in there. It's going to be tough, and it's going to get better - Mo

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  19. Welcome, April! Thanks for stopping my blog and for getting me over here to yours. It's so great you're part of this large Diabetes Online Community and reaching out to share your family's valuable new-diagnosis insights. I've been Type 1 for 26 years (since the age 5), and am always eager to read different perspectives that I'm not as familiar with and don't have as much exposure to! So I'll look forward to reading your perspectives.

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