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Another sleepless night.

Discussion in 'General Discussion' started by JeffBasquez, Jan 8, 2007.

  1. JeffBasquez

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    Once again another sleepless night. Before going to bed you peek in his room to see if everything is ok. You look at the blanket to see if it’s moving. Wondering if today was his last. Hoping that you did everything you can. Lying in bed praying and crying that he will live a long and healthy life, and that one day they will find a cure. Waking up every hour because you can not sleep. You get up and walk to his room, you tuck him in and make sure everything is ok. You check is sugar around 3:00 am to see if his sugar level is normal hoping that it will be, so you can feel a little better so you can sleep. Looking at his face and thinking of all the things that he has been through you want to take his place, and let him live the normal life. Wondering at times why did this have to happen to him. You feel and do the same thing every night thinking that you will get used to it, but you never do. You stay at home with him and don't go anywhere because you don’t want to cheat your self out of a day with him. This is some of what I go through every night just wondering if anyone else goes through the same thing. And what they do to relieve the pain.
     
  2. JasonJayhawk

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    Reading stories like this make me hope that insurance companies will see the "light" when it comes to CGMS.
     
  3. EmmasMom

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    Jeff, I definitely know how you feel!!!:cwds: Here's something I almost posted yesterday.
    Jason, I'm sorry to be the bearer of bad news, but CGMS may not help you sleep! LOL!! It will, however, make life easier and reduce your stress level, (at least once you're used to hearing those alarms). ;)

    Another long night…

    I can hardly remember what my life used to be like, going to bed at night and actually sleeping until morning with no worries. I’m such a slave to this beast that I don’t even remember what a full night of sleep feels like, and honestly, I feel better when I’m awake and can keep an eye on it. Caffeine is my best friend, and if I’d only known how little sleep was in my future when Emma was born I would’ve bought stock in Starbucks. Mmmm…
    Tonight was one of those midnight site change nights, not even my wonderful CGMS can save us from everything. She had a bizarre and very rapid drop after dinner tonight, the 100 points in 15 minutes kind of drop that we all love too see. By the time I got the low alarm she was 56, (and happily running around the house without a care in the world). The monitor was showing 85 and dropping fast with two down arrows, but the graph was very clear, almost straight down. Five minutes later it’s screaming, 66, then 55. It was 10 minutes behind on the actual number, but it still alerted me and saved her from a severe low. I had no reason to test her 30 minutes after dinner, she probably would’ve been in the 30’s in 10 more minutes. Ugh!
    Obviously she didn’t need the 1/2 unit I gave her for the spaghetti, salad and bread she ate for dinner, I have no idea why… She’s actually been so well controlled lately that she hasn’t needed as much insulin. As with everything related to diabetes, it’s a double edged sword. So what we have tonight is a rebound. I know this, we almost never have numbers over 300 these days, and 388, (390 on the CMG, Wow!) is not a result of her perfectly good site failing, it’s a rebound from a low, 10 grams of glucose gel, 2.5 Oreo’s and 3 Clementine’s, (those cute tiny oranges). Why it hit four hours after the low… you got me??? I didn’t bolus for the carbs because she was only 200 an hour later when she went to bed, I assumed she would level out, not spike near 400.
    The books say if you get two readings over 300 you get a new site, and I do what I’m told. Better safe than sorry, right? That’s what my entire life revolves around now, doing the safest, best possible thing 24 hours a day 7 days a week. I don’t even remember what it feels like to be a “normal” carefree parent, or even a normal person for that matter. I’m a slave to my daughter’s diabetes, I’m not bitter about it, it’s just a fact. I must do whatever it takes to keep her healthy and it is a 24 hour a day job. Her life depends on me, and I will not let her down.
    Now she’s dropping like a rock, it’s nice that I can see it happening, but I know I won’t be sleeping anytime soon. I know when her insulin will peak, and I’ll watch it, and then hopefully it will level out and we’ll be back on track. I’ll sleep for a couple of hours, listening for the alarm, hoping everything will be OK until morning, and tomorrow we’ll try again. One more day (almost) down, only a life time to go…

    Guess what… that alarm came as soon as I closed my eyes. Now she’s too low, big surprise! I guess I’ll be up till morning doing my best to get her to a nice stable number before she wakes. One more night down, now I just have to get through today…



    The only thing that helps with the pain is time, and sometimes you just have to cry and tell someone how much this sucks! I had one of those days yesterday. I just don't want to do this anymore, of course I never wanted to do it in the first place... The weight can feel very heavy sometimes, almost crushing. I'm tired of hearing my baby girl tell she doesn't want any more pokes and asking why. I know baby, I know and all I can say is I'm sorry. No one deserves this.:(
    We have more good days than bad, and for that I'm grateful. God willing this will all just be a bad memory some day...
     
    Last edited: Jan 8, 2007
  4. rmccully2000

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    Jeff, some of the feelings you describe is what pushed me to try Dexcom, against alot of people's well meaning warnings. I was holding out for Navigator, but I had reached a point of too many sleepless nights that I was not being the patient mother to my three small children that I used to be. It was the "not knowing" what his blood sugar was doing that usually kept me up once my head hit the pillow.

    The good news is that this will be greatly reduced once CGMS is worn. Before, I was stressed ALL THE TIME from "not knowing". Now, I keep a sensor on Mason most of the time and that stress is GONE :) :)

    Unfortunately, with diabetes, like Amy said, there will always be reasons for interrupted sleep. Our latest story is the night before last was continuous alarms for lows ( He had a straight line and both times I did a finger poke it was 88 and 91 but the Dexcom read 55 to 60) I was really happy that he had such fantastic numbers and a straight line so I was not worried about a low. It was the first night of a sensor, which is always the worst for us. So I took the receiver out of his room to prevent these false alarms. Well, last night at 3:30 am, the thing alarms that it is shutting down, not sure why but I restart it. Which means I have to get up at 5:30 am to feed it calibration blood drops.

    I would still rather have this kind of sleep interuption, then the kind where I am laying on my pillow, afraid to go to sleep. My mental health has greatly improved since October, although, I still yell at my kids more than I used to .. sigh..

    I am seeing a counselor to help with the other issues you mentioned. Why him, what is his future going to hold, having to hurt my child with needles to help him (doesn't this just go against every parental instinct you have??) etc.

    The first thing he suggested I do (which haven't yet because I don't feel ready) is to allow myself to grieve the childhood that was lost. He said I should take a couple of uninterupted hours and write down a letter to diabetes, listing how I feel about it (intense hatred :eek: ) and to write down all the dreams I had for my child that have changed because of diabetes.

    I don't know if it works but I guess it's worth a try. I don't know how else to coexist with this sadness that overwhelms me sometimes.

    Good luck and hopefully knowing that you are not alone can help just a little bit.
    Becky, Mom to Mason, 6 dx 11/05, Dexcom 10/06
     
  5. kel4han

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    I am sorry for your "obsession" of thoughts. I say obsession becuase I am myself completely obsessed with every hour of every day since my daughters dx 12-4-06. I worry about that 2hour "peak" I worry about the 3 hour mark. I worry about 4 hours, and if she wants to eat again now or before this, will this next bolus send her crashing. Today we went back to school after winter break, and having her home for 2weeks was the most comfort I could have felt knowing we were there every min. But now what? She is at school, she is only 6. Will she fight her shyness and tell them I have to check my sugar now! Will they believe her when she says 10min after checking that she KNOWS her sugar is crashing fast.??? Every number leaves me feeling discouraged. I know people take all this so lightly. If they had any idea, maybe would help us not feel so crazy. Why dont they get the fact that we see our childrens life flash before our eyes, sometimes more than once a day??? We feel responsible for their every body function. I suppose as they grow older, we may have more comfort in gaining control. But until then, on those sleepless nights, we are here for each other thanks to these forums. Others that truely understand. Entirely.
     
  6. Boo

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    I guess I take more of the Pollyanna approach to the whole thing. I figure a hundred years ago, I would no longer have this child with me, so every day that I have with him is a gift (in reality, I should really feel more that way about my other kids too. They do not have a chronic disease, but they truly are gifts as well.)

    I don't want to cheat myself out of days with him, but nor do I want to cheat him out of anything, therefore we go places often...both with and without him. I want him to lead a full and happy life, even if it is one that requires multiple shots daily and constant blood sugar awareness. I want him to be able to experience everything that my two (younger) non-D children do. I want him to learn and grow in all ways, including gradually being able to handle D on his own. I thoroughly expect things to get harder during the teen years, but I refuse to let myself get caught up in feeling sorry for myself and/or for him.

    Don't get me wrong...we have our bad days. And, I'd would do just about ANYTHING if I could take this away from him. But I can't, so until a cure is found I do my best to lighten his load, both physically and emotionally. Some days I feel that I do a good job with this, other days (which are many), I feel like I fall short. But, I do the best that I can do...and I keep going.

    I think the emotional support that I get from this website is just as important as any practical info and tips regarding diabetes care. It is very nice to be able to talk with others who completely understand.

    I hope you have a better night tonight! :)
     
  7. beckybuckley

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    Well, just reading the original post I was nearly in tears. I have strong days where I can be more of a Pollyanna like Boo mentioned, but I have a lot of days (and nights) where I am just scared - unsure - angry - scared - unsure - angry. It can be a vicious cycle!

    I love to scrapbook and I have dozens of photos of my children on display anywhere I spend a significant amount of time. Sometimes I look at an older picture and think that was before she was type 1. Life was so much easier then.

    Sometimes I want just a day away from carb counting and hoping for a good number as the meter counts down. But even on those rare days where my mom or sister takes her for the evening - I still call every couple of hours to inquire about her bs. She's 3 now --- and I can only imagine that when she goes off to college someday that I'll still be calling her every day to check in. But truth be told --- I'll probably do that with my son also and he's not diabetic!
     
  8. gsmom

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    I too have been on both sides of the thinking. I thank God for every day that I have him (and his sisters), but can't imagine why him. I have tried to encourage him to have the most "normal" life possible, but often am so worried about what could happen to him and how much more diffucult it is for him to do anything "normally" with the constant checks, extra snacks (heck, you all know what I'm talking about!!). I felt SOOO guilty when he went to diabetes camp and I enjoyed the break from his everyday reality. I too would take it away in a heartbeat, but for now all I can do is to help him stay as healthy as possible so that he can have a long, wonderful life. He tells me all the time, "If they don't have a cure by the time I'm going to graduate from college, I'm going to find it." I pray everyday we all don't have to wait that long. Hang in there parents/caregivers. Our kids are lucky to have us rooting for them. Unfortunately there are parents out there that aren't as concerned about what this monster can do to their children. Working in schools I've seen and heard about too many people that don't give the care that is needed for long term health and I'm truly afraid for these children. I'm new to this site & thank each of you for your support & hope I can do the same for you.

    Jodi
    Mother of Garrett dx 7/2003, Genna & Gillian
     
  9. Boo

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    I say...you go Garrett!! I'm not sure how old he is, but is he accepting donations for his "Garrett Cures Diabetes Research Fund" yet? :D
     
  10. JeffBasquez

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    Thanks for your support i thank GOD for forums like this knowing that i am not the only one that feels this way. We do go out with the kids, and get him the things that the other kids get. We make him feel as normal as possible. Once a year me and my wife will go away for a week. The whole time away you are thinking is he ok. It is times like this that i thank God for family and friends. I have one question what is CGMS?
     
  11. EmmasMom

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    A Continuous Glucose Monitoring Sensor. It checks glucose levels every 5 minutes 24 hours a day. It's wonderful, but the technology is relatively new.
    You can read it about it here: http://www.childrenwithdiabetes.com/continuous.htm
     
  12. gsmom

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    Unfortunately we have all been there! But you aren't alone! Even when you think you are in the middle of the night! It's nice to hear that you and your wife take time for each other too! As hard as it is to go away, it'll help in the long run I'm sure. Hang in there Jeff! Your little one is lucky to have such a concerned, loving dad!

    Garrett is only 11, but he can't wait to start on finding that cure! Our poor kiddos have so much to deal with and right now I'm feeling much better just knowing that there's more of us parents out there. As I said I'm new to this site & already know I'll be back often! Do a lot of you have support groups locally?

    Jodi
     
  13. Mojo's mommy

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    Tears a flowing!

    This posting broke my heart, you are all very good at putting into words how a parent of a diabetic child feel deep inside. It was like I had written it myself!

    The tears never cease to suprise me at how much it still hurts after 2 years..
     
  14. ks0709

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    Yes, I feel that way every day and I wish I knew how to relieve the pain. I dont think it will ever go away
     
  15. Momof4gr8kids

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    CGMS = Countinuos Glucose Monitoring System

    Reading all of your posts brought me to tears. I started blogging a few months ago. More like a journal, not knowing if anyone would read it, or not. I think a few do, I know one person does. When I wrote I don't think about who will read it, I just write it, and if I offend someone with a working pancrease oh well. It helps. It was nice to read, and know that I am not the only one who logs on, and knows that htis is not how life is supposed to be, and that they MUST find a way to fix all of the problems we potentially face, and maybe even invent a starbuck's drip? That is the least they could do is help us stay awake. I don't sleep a lot of the time because I am afraid that I am so tired I wont wake up. I have started using the 2 and a half hours of kindergarten as nap time, sleeping in my clothes with the phone and alarm next to me. Something has to give.

    Thanks for sharing, everyone, and thanks for starting this thread, Jeff.
    ((hugs to you all)) Jamie
     
  16. JeffBasquez

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    I noticed after i got things of my chest i felt a little better. Then reading all of your post it made me feel even more better. I will keep putting what i feel in writing it seems that its not only helping me.
     
  17. gsmom

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    I can sure relate to the pain. It's been 3 1/2 years, but I HAVE to keep reminding myself that he can still lead a full, healthy life. I do still cry, but I have to be strong and positive for him. I used to say "God won't give us anything we can't fix." Boy did I bawl when I discovered how wrong I was. Our new mantra is "God won't give us anything we can't handle." I don't know spiritually where any of you are, but we CAN handle this. We have to for their sakes. I'm trying to take that pain and do something good by learning how to help him live a better, healthier, more "normal" life. Education and advocacy are such great places to start along with venting to each other! The pain is real, but hopefully managable and I hope a good motivator to make better lives our kids! Hang in there!!!! My thoughts are with you!!!
     
  18. elgaralex

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    I had to respond to some of the recent posts, my heart breaks for all of you. My daughter also has Type 1 and I saw myself in every one of your messages. My way of describing my anguish is that there is no longer any peace in my soul. I pray so hard for a cure that sometimes my body aches. I too look at her through the night and wonder why this happened although I know deep down there are no easy answers. I wonder if there was something I could have done differently to have prevented this demon from invading our lives. I long for the days before diabetes. I actually hate even saying or writing the word! It invades my every thought and I wonder how I am going to get through this life sometimes. My sweet little girl is constantly in my thoughts and I love her so much, as you all do your children, and I just want her to have the best, healthiest life possible. I wish so much it had been me that got the diabetes. I'm sorry for the rambling but it feels good to vent. I don't know about any of you but our whole family unit has suffered;much too much to write here, it would take a book to put it all down. I have to believe in my heart that there will be a cure; after all, look how far they've come since years ago, when most diabetics didn't live very long at all. Im so greatful for the fact that she's on the pump and doesn't have to take 5 shots a day anymnore. Let's all keep our faith strong; a better day is coming! Thanks for listening again.
     
  19. bz'smom

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    All I can say (with tears running down my cheeks) HUGS to ALL of us!
     
  20. Mojo's mommy

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    Exactly

    I've often tried to pinpoint what exactly it is that has forever changed within myseldf since "D" and someone hit the nail on the head"no more peace in the soul"
     

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