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Worst day of my life

Discussion in 'Parents of Children with Type 1' started by AsMomma, Sep 26, 2012.

  1. AsMomma

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    The last 12 hours have been horrible.

    DS has been absolutely uncontrollably hungry and thirsty. It got to the point that he'd cry if I wouldn't allow him to eat.

    So I made an appointment, and the dr took his blood sugar and it was 540. Thinking it was wrong she had him wash his hands and got a new reader. This one saying 541. She called an ambulance and he was instantly hooked up to IVs and they've been poking and proding him all damn day! He finally fell asleep and 15 minutes later someone came to poke him again!

    His sugars are still "to high" he has some "acid" in his blood. They're telling me he is diabetic. He is only 6 for Gods sake! I am a total mess. He felt fine he said. He's confused because he doesn't feel sick. His poor arms and hands are like raw meat now. They've pulled me out of the room talking about comas if they can't get it under control. I don't remember 99% of what they've told me....I just want to scream. He doesn't look sick..he isn't acting sick...he was just going through a crazy growth spurt :*(
     
  2. Dan

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    I am soo soo sorry to read your post. I know yesterday was the worst day of your life however, it will get better I promise. We have all experienced what you have at one point or another. My son was only 22 months, so I know.

    It is OK to feel the way you do don't worry. I did not remember anything the first week either. This is a very tough time for us as parents.

    Looks like he is in a state of Diabetic ketoacidosis or DKA. Diabetic ketoacidosis is a problem that occurs in people with diabetes. It occurs when the body cannot use sugar (glucose) as a fuel source because there is no insulin or not enough insulin. Fat is used for fuel instead. Byproducts of fat breakdown, called ketones, build up in the body. It is very common for kids to have high blood sugars and have DKA when they are first diagnosed. My son was over 600 and everything was fine.

    The most important thing from this point on is to try and relax and begin your education process while you are in the hospital.

    Dan
     
  3. Nobby1

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    I am really sorry that you have to go through this, sending big hugs you way. My dd was also diagnosed when she was 6 years old and I promise you that things do get better.
     
  4. MelissaAL

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    My daughter was the same way at diagnosis- starving- we thought she was going through a growth spurt. Heck it was even the same time of year she always has a growth spurt! But then she got sick and lethargic and well, here we are.

    It is rough those first days at the hospital with all the blood sugar checks and lab draws. it does get better as they bring his blood sugar down.
     
  5. Amy C.

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    You have come to a place where many have a similar experience. My son was 3 years old when diagnosed and never really sick, but was incredibly thirsty, urinating an incredible amount and hungry. He also lost weight.

    Your son's diabetes was caught before he was really sick, which is a good thing. Some doctor's miss the signs which results in very dire consequences.

    Growth spurts don't cause high blood sugars, thirst, hunger and ketones in the blood.

    I am sorry you have to join the club, but there are lots of other people in the same boat.

    You have a bit to learn to take care of your son -- we all did. It can be done.
     
  6. sooz

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    I know what a shock the diagnosis must be for you. My granddaughter was only four when she was diagnosed. Like you, her mom took her to the doctor, in her case because she had been wetting the bed and she thought she might have had a urinary tract infection. They tested her urine at first, saw the result and sent her directly to the emergency room from which she was admitted to the hospital. The thing you need to focus on, and yes, even be grateful for, is the day your son was diagnosed was the day his life was saved. It is frightening and overwhelming, I know. You will learn what you need to to make your son's life just as full of promise as it ever was. Go ahead and cry in private, and get angry about how unfair it is, it is terrifying at first. Just trust us when we tell you that it will get easier. Your son is not a diabetic, he is just a little boy who has type 1 diabetes.
     
  7. MomofSweetOne

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    Diagnosis is hard. It will get better. It's going to be painful for the days, weeks, and even a few months ahead. Then you'll start to come up for air from the intense learning curve, the agony will ease, you'll enjoy watching your child thrive, knowing that every day is a gift.

    My daughter was diagnosed two years ago. Most of the time now, diabetes is just part of the routine. The nights can be brutal at times, but the days pass; she dreams, she laughs, she's healthier than before diagnosis. Life is good.
     
  8. maciasfamily

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    As everyone else has said, I promise you, it will get better! I know you don't believe it right now, you can't think straight, and nothing makes sense, but it really will soon.

    Our son was diagnosed at 2 yrs old. It's been 7 months and the difference in him is amazing! I was in a fog for the first few wks known as survival mode. After that, things started to get easier, I felt I could breathe a little more and then a little more and then a little more. Now we feel like we've been doing it for years. It's second nature to us and him.

    Focus on the basics right now. He's at the best place he can be, getting the help he needs. Soon will be when you start the training. You'll learn the basics. Anything you don't understand, ask us or the dr's. There is always someone around this place at all hrs of the night and day.

    Glad you found this place so quickly! Hugs to you!!
     
  9. Pauji5

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    I'm so sorry for your diagnosis.....Like others have said, it does get easier. My daughter was 850 at her diagnosis...it's very scary, especially in the beginning when you don't know much...but it does get better.

    Take care...this is a fabulous place to get information.....
     
  10. virgo39

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    So sorry about the diagnosis. You have found a very helpful and supportive community.
     
  11. AJMom

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    Very sorry you had to find this forum, but you will be glad it is here (we've learned so much here!). My heart aches for you - we've all been in the horrible spot you are right now. You will find a new normal, the raw emotions will heal and life will go on! It WILL get better!
     
  12. BJS

    BJS New Member

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    Prayers to you and your family. My son was diagnosed at the age of 6 as well. We are almost a year out. Stay strong and know that it will get better. You can manage this because you are a strong moms.

    Hugs!!
     
  13. momof2marchboys

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    welcome to the group....this has been the most amazing forum for me since DS Dx in January this year. He was 5 almost 6 at the time.
    The first week or so are still a complete blur to me.
    One of the best things that happend for me during our time at the hospital was a friend of mine's mom and sat with my son one afternoon so I could get some much needed sleep! I of course resisted leaving him but the hospital let me use a room a few doors down so I was right there if they needed me.
    Don't be afraid to call your Endo at anytime you have a question - I have called in the middle of the night on a weekend b/c we had a high that I didn't know what to do to get to come down.

    The next advice I am going to give you is when you meet with the school when he is ready to go that you be firm, have lots of hand outs, a written plan in place for his care and treatments, and to stand your ground

    Also, take care of yourself too, you are going to need your energy for the upcoming weeks/months of late night checks and the emotional roller coaster you will be on. We have been at this for 9 months now and I have my days where I just want to give up but I take some me time and just either go to the store by myself or lock myself in the bathroom and take a nice relaxing hot shower or bath!
     
  14. VinceysMom

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    I am so sorry for the diagnosis of your little one, Type 1 diabetes has no age boundary.... Right now, you are going thru a whirlwind of emotions... Your son will be ok, he is where he should be, in a hospital, getting his lifesaving insulin. He will be poked numerous times. They will get it "under control"...it may take a while, but he will be ok... he will be back to being that happy bouncing 6 year old again! and he will be healthy, because he has you and he has insulin!

    Best wishes to you, as you begin this journey. Believe me, none of us ever thought, a day into this, that we would be here giving advice, lending an ear, to someone newly diagnosed, but here we are... You find the "new normal" for your lives, and you do go on...

    Best wishes .... come back often to ask questions, vent, etc. We are all here for you.

    Kathy
     
  15. DsMom

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    I'm so sorry for your son's dx. My son was dx at age 4, we just passed the 4 year mark a few days ago. You are in shock now, and in the process of having a whole lot of information thrown at you that you'd never dream you'd have to learn. The next days and weeks will be hard. There will be tears and anger and denial. I am sorry that there is no way through this but to go through it...there is no shortcut for these early days.:( However, please listen to those here and hang on to the fact that things WILL get better...and you WILL feel better again. This is a chronic condition...but the way you feel today is NOT. You and your son will adjust, your days will find a new rhythm that will one day feel normal. He will be fine. He will live a normal life with diabetes. He can eat birthday cake, and cookies, and pizza. He can eat everything today that he could eat before dx...you just need to learn to balance out what he eats with insulin. And you will learn.

    I have 2 adult nieces with D...one dx at age 2. Today, she is a happy, healthy, complication-free mother of two healthy kids. Her life has been full and happy with a great education, international travel, and family and friends who love her. She has done everything a "normal" girl would do...except for having a pancreas that makes insulin.;) Your son will still have the life he was meant to have and do all the things you dream for him.

    Visit us here often and keep us posted. The people here will be your best source of how to live with D every day. Take it one breath at a time...you will get through this and you and your son WILL be okay.:cwds:
     
  16. dqmomof3

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    It will get better, sweet momma. My daughter was diagnosed at 9 years old, and like your son, she wasn't sick at all. She didn't understand why we had to do all these things at first, and she especially didn't understand being in the hospital :(. We are almost five years into her diagnosis now, and she is a happy, healthy 14 year old girl. Our children are amazing. They rise to the challenge, and they accept the diagnosis much better than we ever will.

    I am glad you found this forum...it will be your lifeline through the early days.
     
  17. cm4kelly

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    We have all been there -

    The one thing about this board is you are truly not alone. We have all been where you were - in the hospital, watched our kids being given ivs and shots - and some even worse. We stayed in the hospital for 3 days at diagnosis - my son was only 2 1/2! My husband punched the wall, I left the room and cried - and then we just pulled ourselves up by the bootstraps to deal with whatever we had to deal with. My "mom takes care of her kid" attitude kicked in and I wanted to do whatever would make him better.

    Have a private meltdown - and then dig in and start learning. Take things one day at a time. Get a notebook and start taking notes. My son is now a happy, growing, thriving, kindergartner!

    I still melt down every once in a while - but who doesn't?
     
  18. AsMomma

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    Today it's better

    Just wanted to say thank you to everyone.

    Today has been much clearer, still scared, but Alex is ok.

    His dad was able to get a flight home, and his plane should be landing within the next hour. So I'm really glad he'll get to see his dad soon.

    I have a little better understanding of what is going on. Alex had very high levels of ketones, something that isn't supposed to be in his blood. He was dehydrated, which I actually told them that was impossible, because of the amount he was drinking. But I guess that is part of how the body was reacting. He was putting out more than he was taking in. His lab test wasn't good for his kidneys, but they're "getting better". His most recent blood sugar was 202 which is a huge improvement

    The dr said each person is different and it may take awhile to get his exact needs known, but as for labs today everything is improving..but they won't give a time frame for him to be out of the picu.

    I asked him if he wanted me to ask them for a snack for him and he smiled and said "nope..I'm not hungry" we also talked about how he's been feeling and he said he's been having "gas pains" but didn't bother him enough to tell me.

    Now that I know more there were signs, but they I wouldn't have known they were warning signs. He'd been getting tired, but I thought it was due to the sun going down earlier, getting up sooner for school, etc.

    I'm just glad he's ok.

    I called his teacher this morning to tell her Alex wouldn't be at school for awhile and to get his school work. She asked if she could bring the homework and visit after school. I said sure. She showed up with a huge card the class had made him, and a Teddy bear. She visited for a few minutes before telling me she had type 1 diabetes since she was 2. It was pretty awesome to hear her story. I guess I assumed he was doomed to stop sports, but she is extremely athletic, and a runner. I was actually considering homeschooling him since yesterday..one of the thousands of thoughts going through my mind. I feel a little better about him going back to school now.

    Also a nurse that worked last night brought me in a tape recorder. Her son had cancer and she said if it wasn't for a recorder she wouldn't of remembered anything the dr said. She also gave me tips like remind drs I am not a dr, and know nothing about what is going on and asking them to talk "normal person" lol.

    The dr did ask if my daughter was displaying symptoms, and I don't believe she is, but I guess it is possible for 2 siblings to have it. I called the pedi who is coming tomorrow and she said we can test DD if I want but the test won't tell us if she'll get it later on.

    Alex is resting now, he's been all smiles today and we've had time to talk about what his body is doing and what the medicine does. We were reading on the internet and a "pump" came up and I told him I didn't know if he'd get one, but he said he needs a red one if he does, and he asked the nurse if he could have one now so he could go home...but I guess that'll be something that is a ways away.
     
  19. MomofSweetOne

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    Diagnosis Day will probably continue to rank as one of the most traumatic days of your life, but life will get easier. The emotions lessen, but as the PP said, they still come at times. I've always tried to get a family portrait done every other year and completely blanked it out last year. I currently have a coupon, so we need to get it done but I've still been dragging my feet. The why finally hit me this week; the last one was taken the week my daughter began the downward descent of being frequently ill in the months before diagnosis. She still looked healthy at that point. She's healthy again, living life so well, but part of me still doesn't want to let D be in the picture. Time to confront those feelings and get an updated one taken!
     
  20. Christopher

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    Welcome but sorry you have to be here. You have found a great site for support and information. The early days are very tough, you are overwhelmed emotionally, sleep deprived, and scared. But over time you will become more comfortable dealing with all the things you need to do to live with this illness. You will find a "new normal" believe it or not, and things will get into more of a routine. All the parents here are proof of that.

    I would not use diabetes as the sole reason for home-schooling. It is a little scary sending them back to school after dx, but once they get into the routine, things will be fine.

    If your daughter is not showing any symptoms of diabetes, I personally would not test her. Focus on your son who does have it, you have a lot to learn and he needs your full attention right now.

    Here are some books you may find useful:

    Understanding Diabetes (aka The Pink Panther book)
    by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.childrensdiabetesfdn.org/publications.html

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin
    by Gary Scheiner, Barry Goldstein
    http://www.amazon.com/Think-Like-Pancreas-Practical-Managing/dp/1569244367

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace
    by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover.
    http://www.amazon.com/Sweet-Kids-Balance-Diabetes-Nutrition/dp/1580401244

    Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers
    by Ragnar Hanas, M.D. Published by Marlowe & Company, New York,
    http://www.amazon.com/Type-Diabetes-Adolescents-Adults-Caregivers/dp/1569243964


    Finally, in addition to the forums there is a chat room here where you can talk to other parents in "real time", day or night.

    http://www.childrenwithdiabetes.com/chat/

    Hang in there :cwds:
     

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