We are in the ICU


(shaniro) #1

I just found out that my son has T1 today. We are still in the ICU. His blood sugar was up to 693 today. he was rushed by ambulance from the drs office.

 

 i have my laptop in the ICU and am surfing to get info. This is all very raw and new. any advice would be great.

 

he is 9 years old and his name is carter.


(Amy Steward) #2

WOW!  You found Juvenation quickly!  I think that you will find this to be a very helpful and informative website. 

I am sure that you are experiencing all kinds of feelings and emmotions right now.  The good thing is that your son is in good hands now.  You will learn new things every day as you begin to treat him.  It is not an easy process but will become more familiar and comfortable as time goes on.  There are constantly new advances in treatment and there will eventually be a cure.  Try to stay positive and use this and other support resources to your advantage.

Let us know if you have specific questions as you learn more. 

 


(system) #3

Shaniro,

 

I just need to tell you he will be just fine.  This may sound unpopular but for right now, try not to take in too much information.  Keep it at ground zero.  Stay by his side and reassure him.  Sign up for all the classes the Diabetes clinic has.  Look for a support group to network with other parents in your area.  They can be a huge help at this time for you and your family.  My son was diagnosed at 2 and is now 8.  He is strong, growing soooo tall and has boundless energy.  He will become your superhero!

 

Best,

Movy


(red) #4

Shaniro-

Get ready to learn ALOT. Listen to what Carter's doctors and nurses tell you about diabetes and DO NOT hesitate to ask them about any terms or procedures that you don't understand. You'll need to learn insulin dosing, nutrition, blood testing and dealing with everyone's emotional upheaval with the diagnosis. It will be hard to take it all in, but trust me you all will get there. And we'll be here, at juvenation, to help you with our own stories and advice to help you as well.


(annaclairesmom) #5

I know you are feeling very overwhelmed right now. We've all been there. You will leave that hospital with tons of info clouding your brain. You will wonder, how can I do this? Trust me when I say, you absolutely will do this! With every hour and every day that passes you will make it through. You will bet better and better at managing you son's diabetes. Pretty soon it becomes toutine. The will always be challenges and changes. and crazy blood sugars you can't explain, but your son will be fine! I remember my some thing my husband said the me as we were leaving the hospital with our sweet little three year old daughter after she was diagnosed. He said that he was more scared to take her home with diabetes than when we took her home as a newborn. Taking care of a newborn is natural and easy, this isn't. Remember, it is okay to be angry, and to grieve. and to wonder why my child? But it does get better. I still have times when I cry a little, even after two years. Hang in there, you will survive, I  promise!!! It helps to know there are other families who are feeling ,or have felt exactly like you do now!

Susan


(JILL) #6

My prayers go out to Carter! My Daughter was about 9 years old when she was diagnosed and boy were we overwhelmed!  The biggest help to me was when I reached out and talked to other parents that have children with type 1.  There is a lot to know but just take it one step at a time.  Things will not be perfect. I remember one of Jensyn's nurses saying to me after I faxed in her blood sugars "Jill I know you want everything to be perfect but that is not the way this works".  And she was right to say the least! We do the best we can and we are not alone!!! Jensyn is the same exact kid she was before she was diagnosed. She is a big athlete who plays softball, basketball, and volleyball, swims and everything else kids do.  She is just much more aware of her body!

I wish you guys all the best! And please let us know how he is doing within the next couple of weeks!

Take Care!


(Monique H) #7

First, your son and your family will be FINE!  You are doing EXACTLY what you need to be doing, and that's learning everything you can about T1, and seeking out support.  Our son was diagnosed on 5/13/09 while we were on vacation, so that brand-new feeling of overwhelm is VERY fresh.  You and your family WILL work through the initial diagnosis, and will settle into your "new normal" routine.  Learn what you can, as you are able, knowing that all the information will come around again, and again, and again.  Post 1,000 questions to this Juvenation website (soooo fabulous for newbies!), and know that there is an entire T1 community out here pulling for you and your family.

Many Blessings,

Mo


(abutterworth) #8

You have landed in the best place for support.  My son was diagnosed June 19, 2009 and I have fond comfort reading and learning from so many wonderful people on this sight.  Stay connected.  Ask questions and know you are not a lone.  In just a little over 1 month and we are feeling more comfortable.  Ask questions and get yourself educated while the hospital!  No question is to small!  Keep us posted, good luck!

Amy


(TinaM) #9

My daughter is 12 and we were diagnosised 10 July. Here's what I learned.

1 Breath. Above all else.

2 it will be ok. yes there is alot of info. I agree with Movy, don't try to take it in all at once. don't be afraid to tell the nurse/educator that you need to take a break. and don't forget to breath.

3. you are not alone. i know it feels that way. there are alot of people that are and have been where you are. there are people on this site who are in the very early teens and i learn from them. we met another family while we were in the hospital, another 12 year old girl. talking to her parents helped us and the girls bonded and are BFFs. and together we breath.

4 take it one meal at a time. don't think about tomorrow or next week. think lunch. then dinner. when we broke it down like that it was smaller and easier for all of us (my daughter, husband, 2 other daughters and i) to deal with and learn.

5 did i mention to breath. for me that was the hardest...

{{hugs}} and prayers

Tina


(velvetmoon) #10

take a deep breath.....Don't be afraid to tell people to back off, in the begining.  All of a sudden everyone knows a little bit about diabetes and its all wrong from what the dr's tell you.  I wanted to scream!!!!!!  I had a coworker who was constantly telling me about her diabetic cat.  I almost chewed my tongue off.    Remember u guys r a team.  good luck


(shaniro) #11

well, we are still in ICU but improving greatly. catheter came out tonite, ivs are just fluid now no sugar or insulin. taking the shots and hoping ivs come out tomorrow. thanks for all the responses. i have been reading them and have laughed and cried at what you all have written. thanks so much.

 

shannon, carter's mommy


(mamacolby) #12

been a while since i have been back to the site to be honest, but my now 4 year-old was diagnosed December 2008.  i jumped at every opportunity to reach out and take everything in but kind of needed to slow down and relax. 

just know that you will get lots of practice at learning all this stuff and try to focus on him feeling better each day in the hospital...poor little man.  i can still hear my little guy screaming for a drink on our way to the ER and then in the waiting room.  also, the health part is a no brainer because it means life or death for your child, but it is still the emotional part that i stumble over.

try to take it easy and keep us posted...or even post a rant because that helps too :)


(Laxmom10) #13

Shaniro

I also found this site while at Childrens Hospital in Boston this past June 22.while in the ICU.  It has been the one place where I feel at home.  I read every post and it has been of comfort to hear of everyones experiences.   It's been a little over a month and half for us and believe it or not, it's getting to be a new norm.   I still cry at a drop of a hat but that's okay too.   The important thing is the Michael is going to join the site!!!  Yippee for him  :)  He sees how great a support system it has been for me. 

The folks on Juvenation are so wonderful...take comfort that you are not alone.  Everyone's advise is so spot on!  Thank you guys for your inspiration - it keeps me going and I am certain it will for Shaniro.

Shaniro - everything will be fine...baby steps.   Stay in touch.  My prayers and thought are with you and yours.

Nancy

 

 


(JILL) #14

Shannon~

Thanks for letting us all know...that is great that he is improving! Before you know it he'll be running around and you will be telling him to settle down :)  Hope you guys will be home soon!!!

Take Care!

XO


(Monique H) #15

Yay for coming home soon!  He'll be feeling sooo much better by the time he's been home a day or so.  You guys will settle in quicker than you think.  Just take it one hour at a time :)

Mo


(AngelSent7209) #16

I know you wrote this a couple of days ago, but I just joined this site & this group, & wanted to tell you that it's going to be okay.  Take it a day at a time.  My son had several trips to the ER & a few stays in PICU before he was finally more stable & had his disease under better control.  I'm very glad that Carter is doing better & will hopefully be discharged soon!  Read all you can, learn about this disease, & be prepared for a roller coaster ride (but remember...while roller coasters can be scary, they have a lot of fun parts!)

I don't know if I really belong in this group, because my child with diabetes is no longer a child.  Christopher is now 23, but was diagnosed just before his 13th birthday, so maybe my 10 years of dealing with parenting a diabetic child may be of use to someone!  He is now in great shape, exercises every day, watches his diet, checks his sugar & takes his insulin as needed, & is now a happy, healthy (as healthy as you can really be with a diagnosis of diabetes)& active young man that I am very proud of.  He lives a normal life, has a job, dates, hangs out with friends, & his diabetes hasn't stopped him.  Of course, he's hoping that a cure will be discovered in the near future, so he no longer has to worry about injections, fingersticks, & future complications.  But maybe knowing that he is living with this disease & living a normal life may bring some comfort to you & to others with children newly diagnosed with Type 1 diabetes.

Terre (mom of Christopher, diagnosed in 1998)


(system) #17

 

Our Son was diagnosed July 24th, 2008 (11 yrs old)

I found it was almost like going through Grief.

Denial-"this can't be happening" ***Anger-"why?" ***Depression-overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning what you think as the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. ***Acceptance-there is a difference between resignation and acceptance. You have to accept. Realization that there is no going back. That it is not your fault.. ***You will survive, even if you cannot believe that now, just know that it is true.  I've become a stronger person.  I've cried a lot of tears!!! I was on auto pilot the first few days.  By day 3 I had a break down in the shower! It was good for me! There might have been more tears than water!

My Grandmother once told me in High School, "God will never give you more than you can handle". Oh,  I called her right after Coleman's diagnoses. I said.  "God has me toughly confused with someone else!!!" ;)

My greatest worries the first few nights; true story and my husband thought I was nuts... I was worried about him being able to get life insurance and Health insurance as an adult. Hello.... I can't control that.  Of course I have since found out he can; but that was where my mind had gone in the first hours of diagnoses.

Hang in there sweet sister!!! It will all work out....

 


(Monique H) #18

Welcome to Juvenation, Terre!

Those of us who are new to this definitely need all of the experienced parents out there to help us through.  Please never hesitate to jump in and share.  We need it!

Mo (mom of William, diagnosed 5/13/09)

 


(imnocleaver) #19

Hi shaniro -- I hope your son has continued to improve and is getting ready to go home, if you're not there already.  I just found this site myself, and had to join after reading your post.

My son, now 12, was diagnosed last December.  We, too, had to go straight from the dr's office to the hospital, where they determined his bg was at 720.  After being transferred to another hospital and setting up camp for a few days, we were all feeling confident and itching to go home.  As smart as we felt while we were in the hospital, though, as soon as we set foot in our front door, panic set in, and we were certain we would somehow mess things up and kill the poor kid within 24 hours.  Amazingly, we still haven't after 7+ months.  (Although being 12, he still may meet a sticky end at the hands of his parents from battles over messy room, incomplete homework, general crabbiness, or the like.)  :)

Since that time we have done what was unthinkable back in December:  we have let him out of our sight and released him back into the wild.  He has since had sleepovers, gone on a couple of Boy Scout trips including a week long camp, spent a week at his grandparents without us, and vacationed with us on a cruise to Mexico.  If you had asked me back in December, I would have thought it impossible, but trust me, it gets better.  (Although I still had a knot in my stomach every day during that Boy Scout camp.)

My advice would be just to deal with it in your own way, one day at a time, working through any fear/anger/questions/doubts as they come up.  As for me, I was a wreck at first, and my abilities as an expert worrier multiplied exponentially overnight.  I knew things were improving for us once we were all able to start making sarcastic & funny comments about the whole situation.  (When all else fails, we tend to turn to dark humor around here.)

Hope our posts have helped some...we've all been there.  Take care, and keep us posted.