Lost my 20 yr old son

Coping & Support
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I lost my 20 year old college son to an "acute DKA" during a pump failure one year ago.  Apparently the battery cap was not seated properly.  I saw him briefly the afternoon before and he felt he was "just tired" from all the end of semester tests and social activities going on.  He went back to his apartment to rest, and by the next morning he was gone.   We never knew that DKA could happen so fast.   He had diabetes since age 7 and only started using the pump for the last year.  I was not as familiar with the pump routine since he got it while away at college.  We all thought with the pump he would have much better control and convenience.  Now we feel absolutely terrible for recommending the pump, not knowing that DKA could happen so fast and not realizing that he was in trouble when we saw him the day before.  

My son was a diabetes camp counselor and mostly had good control.  Believe it or not - he had never actually passed out from a low and never had a seriously high BG or ketones.  Never an illness or hospital visit since his diagnosis.  So he had no experience with DKA symptoms.

I would also be interested to know if anyone has any experience with any similar situations.

 

 

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Therese,

I am so sorry to hear about your son. I have had a couple of run ins with pump issues myself that landed me in the ER. I think depending on the person DKA can happen very quickly. The first couple of years  after my diagnosis I never had problems with ketones or DKA but the past year or so, I have gotten ketones immediately after a couple of hours of being high.

It is a total and complete tragedy what happend. Please don't blame yourself, you didn't know that would happen. I will keep you and your family in my thoughts.

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I am very sorry to hear about your son.  It's the worst.

I have not had a child due to a DKA caused by a pump malfunction, but my son did die probably becuase of diabetes almost 8 years ago at the age of 14.  I miss him terribly still and not 5 minutes go by where I don't think about him at least once. 

He did his blood test and snack and dose like always.  He was below 100 so he had an extra snack and slightly smaller dose.  He died in his sleep.  The autopsy showed the cause of death as undertimined or some such wording.  Some theorize he got too low.  I don't really buy that one.  I'm sure he didn't go into DKA because of the dose and snack etc. he had before going to bed.  He was also on NPH so he had some long acting insulin too.  Perhaps it was "dead in bed syndrome"?  I've also learned that people who have seizures, which he did sometimes, can die in their sleep sometimes too.  Really doesn't matter.  He's gone and we miss him terribly still 8 years later.  Time has taken some of the sting off, but not all.

I'm not sure what else to say, but hang in there.  What helps me is to think that Nick wouldn't want me to be unhappy becuase of him.

P E A C E

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It is sad to hear about that.  My brother never wanted to go on the pump, even though his endocrinologist had recommended doing so several times.  He frequently talked with other diabetics when he was at the doctors or at dialysis about the pump, it's advantages and disadvantages.  He said they told him that use of the pump was more often a blessing and not a hinderance.  Many told him how much more freedom they had.  Instead, he chose to do his self monitoring and kept a daily log of all his readings and med intake.  He always took this journal with him when he went to the doctors.  They would review the information together and decide if any major adjustments were needed.  He always was able to determine and make small chnages in dosage if need be.

Not to make it sound cold or uncaring, but all technology is subject to flaws and mechanical failure.  While the pump is definitely a convenience factor, it does not take the place of self monitoring and self medication.  With diabetes being as unpredictable of a disease as it is, subtle changes in diet, exercise, stress and more, can easy throw off a diabetic's blood glucose level at any given time.  Unfortunately, the pump is unable to detect such changes and continues to dispense it's preset dosage.  So frequent blood glucose checks become even more important.

Failure of the pump due to a bad battery cap is a very scary scenerio, but it is part of the risk taken when deciding to use modern medical technology.  However, human intervention should never be superseeded, nor one should become laspe by placing trust in something we are told will make it easier.  There is nothing easy about being diabetic!

You should not blame yourself for what happened, and you also should not feel bad for recommending the use of the pump to others.  It is extremely sad and unfortunate what happened to your son.  It is a rare occurence, but it still happens.

 

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Thank you all for responding. 

DDrumminMan - I am very sorry that you know.  It sounds like our sons would be about the same age.  Did I read in your bio that you also have T1 diabetes?  That must be very tough to deal with, especially since losing your son, Nick.

I learned of the "dead in bed" syndrome afterwards.  And I have read that it's mostly boys affected.  Billy never had a seizure that I am aware of but I wonder sometimes because he was fine one day and gone the next morning - so fast.  College, exams, sports, parties, and lack of sleep may have triggered something that we'll never know.  He was a diabetes camp counselor in Rochester and had just had a visit at Joslin in Boston only 2 weeks prior and had no problems and a decent A1c.  He had all the advantages we could provide him with.  But you're right, it really doesn't matter for us at this point because we just miss him sooo much - plain & simple.  However, if we can prevent a simple problem from becoming a nightmare for someone else?  Please keep in touch - we may need you and you us!!  P.S.  I visit the U of Wash every few years.  Did my fellowship out there and have some friends from the military out there.  Great city!

Stanley Bashura - We know you are not cold & uncaring. We are not mad at the pump - my husband and I are both in the medical field and know that "stuff happens" even with all the best intentions.  And we realize that pumps helps most of the people most of the time.  We are just really mad at the real culprit here - diabetes.  I just wish we had gotten Billy the pump while he was still at home and had us looking after him on a regular basis and helping him learn the mechanics of it.  With his computer, cell phone, MP3, etc.. we thought he could totally work with an electronic device and it might even be more compatible for him. 

Gina Thank you for setting up this site and listening to everyone!  My family & I go to grief support but have not found anyone that has had to deal with T1 diabetes or any other chronic illness.   Sometimes we get reactions from people who have lost children to other circumstances (accidents, suicide) tell us, "Well, you must have known this could happen or have been prepared for the worst".  No, we really weren't.  We didn't have our heads in the sand but were all very positive and know there are mostly success stories.   Or we get comments like, "Was he not taking care of himself?"  We don't think ill of them because if we had no experience with diabetes we might think the same.  It's still tough experiencing a loss somewhere between a terminal illness and a sudden unexpected death.  We know this was a rare and freak accident of sorts.  We believe that for just one minute he did not check his BG before laying down to sleep much like a good driver just once not looking both ways before pulling out into the street.  I used to ask my son to just take 30 seconds to test and correct as often as he checked his messages.  Easy to say.  But we are all only human.  Please be careful and take good care.  The odds are in your favor and we really believe a cure is on the horizon.  Best wishes to you and all the others dealing day to day, hour to hour, and minute to minute, with the testing, diet, injections, and worries!

We joined a JDRF walk last summer with 81 of Billy's family & friends, plus a walk was held in Rochester with his camp co-counselors.  All together we raised over $18,000.   This summer a walk is being held in our hometown because of the large response.  If Sonia Sotomayor makes it to the Supreme Court, we hope for a cure very, very soon!  For now, we just pour everything we have into the camp that he loved so much, and the JDRF walks to raise money for research.

.

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You son was a very handsome boy and it sounds like he was going great things with his life.  I recently lost a good friend to diabetes.  He was at work (we worked together but I was on vacation).  His blood sugar got too low and he knew it.  He tried to find sugar but because it was so low he got confused and disorientated.  He passed out and when the paramedics came no one told them he was diabetic.  He never woke back up.  They called me on my vacation to tell me.  It is still hard to think about. 

My thoughts are with you.  Loss of anyone close to you is hard.  I lost another friend to cancer 2 years ago and my sister to a car accident 2 months later.  I never thought I would be able to move on.  I still think about all 3 of them every single day but instead of it making me sad, it makes me smile and reminds me to appreciate every breath I take.  If you need anything or just want to talk, please let me know. 

Kathie

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My heart goes out to you and your in my prayers as You are standing where I was at a year ago on my birthday March 3, 2008 I lost the most important part of my life from Diabetes 1 which was my beautiful Hiedi she was 26. She was in Texas waiting to go to school as she wanted to be an Emt and an RN. She was very good with helping children and people in need. She worked as a counselor for disabled and retarded people. She was so full of life and loved by everyone she has a heart of gold, her little niece misses her terribly, she is 9 it has been very hard for her to understand the why's of diabetes1 but every time she was in the hospital because of high blood sugar she was right by her side. When she went to Texas we all worried about her because she lived alone , I wish I would of never allowed her to go alone, but she was an adult. She had decided to come back home as she had a neighbor that kept her stressed out and I tolf her to come home and we would go down there together till we could get her in a better apartment. She came down with a bad headache, side ache and she could not keep anything down. She called me every day and I did her she was always able to overcome the flu which is what she thought she had. I do not think she was eating as she was in the hospital in Jan and the Doctors changed her insulin and also put her on pills and I was told when she became diabetic in 2004 she would never be allowed to be on pills. She told me she was fine but I don't think she was. She was always good about her diet as she was always looking up recipes and she knew when her BS would go low or high. I really don't know what happened to her for sure. She kept telling me she was going to rest and she promised to go to the hospital the next day as she had no way of getting there but I also told her just to call the ambulance. I blame myself as I knew the risks and I should of called 911 and told them to pick her up as I lived 3 hrs away in another state. When she didn't call me the next day and I should of called her sooner she never answered so I called the police to check it out. The most horrible thing I heard over the phone was that she was gone and had passed away . That was the end of my life as she was my life and a part of me died in that moment.This is the first time I have shared this story with anyone but she developed diabetes from a virus when she was a child but never really knew it till she was 20. She was a loving caring person and we all miss her so much, She was also a fun loving girl that enjoyed life. Why this disease has to take out young children, we really need to work hard on it. I would like to do a fun raiser for her in her name for Dibetes1 if anyone has any ideas. As I live in pain everyday because I wasn't there when she really needed me, maybe she wouldn't of went into the coma and never woke up.  If I could of gotten to her in time maybe she would still be with me as I had always caught it in time before. She just could not wake up. I would like some in put on this so I can do something to fight this disease for her. She was a lovly person and I know there is something special about each one of these children and we need to fight for them. There are pictures of her on facebook. I can add some pictures of her on here.

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Dear Marles,

I would love to see some pictures of your daughter Hiedi.  She sounds like such a wonderful and bright person that enjoyed helping others before herself. 

I lost my son in April 2008 and I can relate to the struggles of "what if?" that you are going through as well.  I can think of a million things from that day to things from years ago I could have done differently that might have changed the outcome.  My mind can't help but to keep replaying the scene while I try to imagine a better result "if only I had..." 

The best advice I got from a friend that I keep trying to repeat to myself when I'm feeling like it's all my fault (which is still very often) is this - "You did the very best you could with the information that you had at the time.  If there was anything you could have done to save your child you absolutely would have."  I know this is true because that boy was my pride and joy from the day he was born and there was nothing I wouldn't have done to help him. I just needed more information to know how ill he really was to help him this time.  I felt tricked.

Both Hiedi and Billy were young adults trying to become independent and live normal, active lives.  It sounds like you knew your daughter as well as anyone.  It is still a very tough call to know when to be truly concerned and tie them down to test their BS and take their insulin/juice or when to back off to give them the space that any young adult deserves and not nag too much (then keep your fingers crossed).  I can tell from your post that you were a very loving and concerned Mom and did the very best you could with the information that you had at the time.  If there was anything you could have done you absolutely would have.  Hiedi knew how much you loved her.

Please keep in touch, Marles.  If you ever need to talk, I'll be here.  I am wishing you peace.

~Therese

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Marles,

I am so sorry to hear about your daughter.  My heart aches for you and I will pray for you.  Death is a very tragic thing, especially when it is so sudden and to such a young person.  When it is your own child it makes it much worse.  However, it is always great to have someone to talk to.  I have had many heartaches the last 2 years and everyone kept telling me it would get better.  I didn't believe them for the longest time.  I am now able to talk about it without crying (for the most part).  My heart still aches but it is a different kind of ache.  I will always miss my sister and 2 friends but whenever I want to talk to them, I just talk.  Even if I am in the car driving down the road.....I know they are listening and I tell them how much I miss them every day.  I know they would want me to grow from this and I have.  One friend died from cancer so I do fundraising and donate time and money to the American Cancer Society.  My other friend died of low blood sugar.  He only died because no one knew what to do.  I have raised awareness about what to do with people with diabetes.  I have stressed at work how important it is to know your fellow associates.  If someone knew, he could have been saved.  Anyway, I have to say it does get better but what made me heal was to find a way to help make this world a better place.  After my sister was killed I took a long look at myself and asked what I was doing to make a difference.  I now do a lot of volunteer work.  It has helped me heal the wounds I thought I couldn't live through.  Let me know if you want to talk!

Kathie

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[quote user="marles Gilson"]

I blame myself as I knew the risks and I should of called 911 and told them to pick her up as I lived 3 hrs away in another state.

[/quote]

marles, please don't blame yourself.  I know it's something we do becuase that's just the way our minds work.  But please avoid it.  It wasn't your fault.  Who knows whose fault it is?  Placing blame won't help anything.  One thing I read that helps me is that when you're feeling down and blue and blaming yourself etc., your daughter is no closer to you than when you're not down and sad.  Also I know that Nick wouldn't want me to be sad becuase of him. 

We've just got to live on and remember the good times.  Time helps some, but it does take a while.

[quote user="marles Gilson"]

I would like to do a fun raiser for her in her name for Dibetes1 if anyone has any ideas.

[/quote]

A great way to raise awareness and money for diabetes research etc. is to do the JDRF Walk.  On the site you can sign up and create your own team and call it whatever you want.  Then you invite others to join your team and do the walk too or just donate money.  My duaghter formed "Nick's Team" last year and we got my brother and neice to join us.   My sister-in-law does the one in NJ with a team for Nick every year too.

Go to jdrf.org and click on the walks link.  Then, "start your own team".  

It's very hard, but we've got to hang in there!

 

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Therese

 

I am so sorry to hear your story. I do thank you and the others who have put theses stories here in juvenation. Our 10 year old daughter is type1. These stories have made us so much more aware of the risks of Type1. By putting your stories here I hope that others will have that little bit more knowledge to help in their management.

 

Again thankyou.

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That's really sad. My aunt died from diabetes. It wasn't from DKA though. It was from a kidney transplant and then she had a blood clot and it went to her heart. I never got to meet her. She was 20 also.