New to it all


(Jessica L) #1

and I am so tired. On 12-15-09 I ran my 9 year old daughter to the ER. She was almost completely none responsive. They got her right back tested her blood sugar and it was over 500 and they said the words "she is diabetic" I went numb. They air lifted her to a childrens hospital with a picu about 45 min from my home. Thank goodness for family my sister in law drove me up there while my husband got our two boys from school (they are high functioning autistic have adhd and absence seizures 11 and twins) to leave them with his brother so he could join me. The medic on the copter called me about 10 min before we got there to tell me they made it and there were no changes. She was one of the longest kids they had on drips her potassium and such were so messed up. I am sure you all know the bum rush of info you get at the hospital and I am sure its the same who catch it before that trip. It was and still is overwhelming. They released her friday after lunch. I feel like I know enough for now but nothing at all at the same time. I dont get how I will ever just know how much insulin to give her in the future or how to adjust it on our own. Our case manager is great and I want her forever lol. I dont want to have to know all of this or have to be this much more responsible for keeping her alive. I am a parent not a medical professional. It scares me that this is added to my already packed job title as a mother. I know its only been a week and I have to give myself a break thats why I am here getting it all out to others who I think may understand.

Anyhow she just had her first episode of low blood sugar and I freaked out gave her her lunch cause it was time and I remember someone saying or us reading if it was meal time to feed her. Well about 10 min later I tested her again and it was still dropping so I gave her 4 oz of juice made her stop eating and tested her again 15 min later and let her finish eating cause it was going back up. I am sure I did a bunch of things wrong in there and feel guilty over it now. I am sure I am going to make her spike with the extra 15ish grams of carbs and then will kick myself again. Tho we are still adjusting her insulin trying to figure out what she needs daily. Ugh I dont know someone tell me I am not the worst mother in the world for how I treated it. I guess that is more than enough for one post. Forgive me I am trying to hold it together for so many and am just so tiered.


(system) #2

Sweet Girl; BREATH.... You are going to be fine.  And you will find a new normal with all of this.  You will have good days and bad days and so will your Daughter.  It's ok to be upset... and over time you are going to have a roller coaster of emotions.  Hang in there!   I'm not going to lie, it SUCKS; but you will have better times to come, and it doesn't suck all the time. It's a huge learning curve.  We are all here for you! 


(Jessica L) #3

Thanks, breathing would be good. I do feel suffocated right now by it all. I know as we learn it will get easier but right now it just feels like its to much. She is dealing with it better than I am. She has had her moments and I am sure as she gets older there will be many more to come with her. I know I have to deal with it tho and keep on going. At first I was just scared for her life now I am I guess going through a grief process or something like it. 


(stanandkathie) #4

I felt like it was a grieving process also.  However, I want you to know that I understand how you feel and how hard this all is for you right now.  But the good news is that it really does get better.  I cried the first few days thinking that my daughter might be better off with a new mom but now I feel like I have been doing this forever.  Things change and life is unpredictable but I will say that it is all part of a plan.  You were chosen to be the mom of 3 kids with special needs for a reason.  You must be a tough woman with strong family morals.  I, for one, am very proud to have had the chance to meet someone so wonderful.  The good news is you found this site early on and will have the support of many wonderful people.  Good luck on your journey and I am hoping our paths cross again!

Kathie


(Jessica L) #5

Thank you. I heard I was strong before just with my boys. Right now with this I dont want to have to be strong. I do know in my heart it will get better and I wont always feel this way. Right now tho I want to yell and scream and most of all I want to yell and scream for her.


(Born with it) #6

Hi Jessica,

First, let me applaud you!!! 

 It will get easier.  I speak from 47 years of experience.  I have been diabetic since birth.  My mom, brother, son, nephew and granddaughter (Alana) are all diabetic, too.  We are having a hard time with Alana (she's 2). 

Take a moment or two or three for yourself and breathe.  Everyone here knows exactly how you feel.  The holidays are hard, but manageable.  It will take time to figure this all out.  You will have good and not so good days.   And you will learn from each of them.  You sound like a very tough, strong and smart women. Accept all the help offered to you from family and your new doctor and his staff. 

When you feel up to it, I will share my funny diabetic stories with you!  We have quite a few! 

Hang in there, sister!


(Jessica L) #7

Thanks and yeah I dont think it helps that its right before Christmas. I had a hard time with stocking stuffers for her. Good thing she likes beef sticks for a protein and thinks its way cool if Santa fills her stocking with those. I wish my family was close we moved to Colorado 2.5 years ago from Cali. My family is all there my husbands is here but its not the same as my own. Nobody in the family has had diabetes so its a very new thing for all of us. I cant wait until I feel up to your funny stories.


(Born with it) #8

Beef sticks, eh?  I will have to try those with Alana.  She eats just about anything you put in front of her!  LMK if you need anything.  Or just need to vent.  I'm a good listener!!

Take care!


(Jessica L) #9

[quote user="Lori"]

Beef sticks, eh?  I will have to try those with Alana.  She eats just about anything you put in front of her!  LMK if you need anything.  Or just need to vent.  I'm a good listener!!

Take care!

[/quote]

Yeah some have 0 carbs and others are 1 carb per beef stick. They are like the slim jims but bigger. I found them at walmart by all the beef jerky.  Thanks.


(djwright) #10

Yes, hang in there!  My daughter, age 9, was diagnosed on News Years Eve 2009.  it has been a very hard year, but it does get better and so will your daughter.  This is a great website for info and support.  Stay strong.


(JDVsMom) #11

Dear Jessica! How my heart aches for you as I know all the feelings you describe so well (as do all the parents here.) I was able to (mostly) keep it together during my son's hospital stay and the first weekend at home. The first Monday when my husband was back at work and I was all on my own, I was totally freaked. Nothing happened, but the grief was overwhelming. Thankfully after my husband came home from work, I was able to talk and cry, cry, cry with a dear friend. I was so exhausted but it helped to let those feelings out. It took me weeks to determine that all the emotions I was going thru were grief - literally mourning the death of my child's good health. When I finally realized that it was OK to be sad about it and really worked thru the sad emotions (vs. just trying to tell myself that "it could be worse" or "You have so much to be grateful for", which were true, but not comforting.) It was comforting to CRY a lot and write my emotions down. It is OK to feel whatever it is you are feeling. One method that I learned dealing with my own emotions was to imagine that I had my sad, angry, despairing, etc. feelings in a box in a closet. I had to make time (like an hour ever other day) to take the box out of the closet and work thru those feelings. Then when my time was up, I put the feelings back in their box until the next day when I could take them out again. Obviously as a mother I could not just let run rampant over my life 24/7 for a few weeks, but I couldn't bottle them up and pretend they didn't exist either (which I did for the first 3 mos after dx). This was a good compromise, because I could spend most of my time doing what needs to be done as a mother and wife  -and I was surprised by how quickly I was able to work thru what I felt after just a few hours spent like that. (If you need to throw something - waterballoons against the side of your house are great!) Coming on here is also great!

You are already doing great by finding no carb treats for your daughter and finding joy in the fact that she loves them! You did just fine treating the low - the suck. The only thing I'd suggest is have her drink the juice first and then eat the rest of the lunch. :)

My prayers are with you,

Becky


(Jessica L) #12

Thanks Becky. Yeah our diabetes case manager said the same about the juice first check in 15 then lunch or small snack. Depending on the time.

 

I am feeling much better today actually. I was a little low this morning but after I gave her her insulin I got better. I have always said if I ended up diabetic I would die cause there is no way I could deal with needles daily. I had a traumatic childhood experience with them. Its amazing how fast I am getting over that when it comes to my daughters life. Its still hard on me but has improved greatly from the first one. I think it helps I do mornings and my husband does the dinner ones. So its not all on me all the time. Not that I have down time cause I am cooking dinner and trying to give my boys a moment of my time. I go to bed right after she does cause we have been doing 2 a.m. checks now that she is getting lower at bedtime snack time. I have a hard time going back to sleep once I wake up so I am up for a good hour at night.

 

I love your box idea. I can find that useful and feasible for me to do. Once I find the time to it. Which I am sure will come after they go back to school in January.

 

Jessica


(red) #13

Jessica you are being so brave. There's so much to learn and grapple with when your child first gets diagnosed. It's like trying to drink from a firehose and you can feel easily overwhelmed. Just keep doing what you're doing. Absorb what you can and keep asking the smart people on this site about any specific questions you may have. We're all here for you.

 

~ Red


(Matthews Dad) #14

Hi Jessica

Every parent here knows what you have felt this week and every one of our children know exactly what your child is experiencing. It hard but not hopeless. At this stage your so filled with information your afraid your going to forget something. Your hearing terminology you never heard before A1c, Bolus, infusion sets, pumps, BG level etc and you wonder will it ever get easier and they answer is yes and pretty soon. My son was diagnosed in April 2009. The date of diagnosis will become remembered the way an anniversary and birthday are.

Your going to go every where with a backpack the size of a truck, crackers, candies, fruit boxes, insulin coolers and you will know the school nurse better than most of your relatives. In that time you will see your child go thru many things - you will admire their bravery at being able to take their own BG with their meters and handle the shots of insulin. They will know what a high feels like and a low. They will get the flu and they will go away from home on sleepovers, camping etc and it will be o.k.

You will feel guilty - that o.k. but you didn't cause it - Its an auto immune thing not a lifestyle thing.  You could have fed her  vegetables since the first bite and controlled her diet and exercise and it would not have helped. It happens - you can't change it so you make it easier - your strength is her strength. She will get mad (I am sure you have seen it prior to diagnosis where it just seems she is being so stubborn that it is abnormal) and you will get mad back - that is until you figure out she is high.

You will lean about diabetes camp - my son is a boy scout and had his chance to go to Destin Fl with his scout troop, Ft Lauderdale Fl with his church youth group or about 150 miles away to diabetes camp. It was a no brainer for him - diabetes camp. You can't explain it you have to experience it.

But those things will come. In 3 months the backpack will get lighter and in 6 months it will more than likely get smaller.  

Make this site one of your favorites - it will become that - The information on this site is from those who are there - its not medical info but believe me you will learn more than any non diabetic nurse or healthcare worker can ever tell you.

Get some sleep, find a meter that your comfortable with and just let time work its magic. 


(Matthews Dad) #15

I am feeling much better today actually. I was a little low this morning but after I gave her her insulin I got better.

 

Jessica, this sentence will have a totally different meaning in a few weeks. LOL


(Jessica L) #16

I thought her mood swings were just puberty. I was scared for the years to come if it was that bad at the start. Now I know. Most of my guilt is for not knowing sooner. Being sick for 3 months is a long time but its all explainable by other things so there is no way I would have or could have known. I am already letting go of that guilt. There was some with the injections the first few times but I had to get over that fast so I could do them better. The hardest to let go of is I cant make it better or go away for her. I am the mommy I am suppose to make everything better and this time I cant.

She did her first test by herself today. I am so proud of her. She didnt think she could ever do it.

 

I cant even think of letting her go anyplace other than school without me. Even at school I am 3 minutes away and already have a relationship with a good portion of the staff because of my boys. So I know I can be there all I need to be.

 

Yes tho in time I am sure my feelings about it all will change. Nothing ever stays the same well except she will have this for life and I will love her always.


(Matthews Dad) #17

You are right - as a parent the guilt is what we missed prior to diagnosis. The times they were just so tired but it was because they were staying awake longer than they should, not eating right, not getting exercise, just being lazy, just being a teenager. When they would get stubborn it was just being a kid, all kids are like that, my friends kids are like that, just being a teenager. If it happened all in one day or two it would be noticable but it doesn't. It happens rarely but always explainable. Guilt is easy to get - we can't fix everything and they are stronger than we are at times when it comes to diabetes. Being there for the times when they have a low or giving them the benefit of the doubt when they get stubborn will make up fo any guilt. Its just time. 


(Tanya) #18

Jessica, I think we have all been where you are right now, and I have to agree it does get easier. There will continue to be good days and bad days, but you take them one day at a time. This website has been a life saver for me to hear so many people deal with the same things my son and family deal with. We are all here for you.

 


(Jessica L) #19

Thanks, I need more help or education sooner than later. I dont know how I am going to do it but I need to find a way. I am feeling more lost the more info I read here. I feel like I am doing everything wrong tho I doubt I am from what I was told to do. I feel like a baby just learning to walk. They take a step forward and get that look on their faces like "Oh bleep" I did it but no way can I take another then they flop on their butts and go to what they know crawling. I want to crawl again so badly right now. The fear of messing up or just falling on my face with all of this sucks. Its just not my face I am falling on but my daughters as well. Its not fair to her I am responsible for all of this. I cant wait until I am sure of myself for her diabetic care. I know the day will come but right now fear of messing up or messing her up is so strong. grr I want it to end. I guess I am off to read more info to reassure myself to educate myself more to not fear this so badly.


(Matthews Dad) #20

Were all here for you. I know you are feeling lost right now - you wish you had a nurse in the room to watch to make sure you don't do anything wrong. Let me start by letting you know that just about every parent I have talked to has made a mistake at some point in care. Some have given the wrong insulin, others too much, etc. My own son was using the insulin pen and was spinning the dosage dial around and forgot to turn it back to the required dose. What he ended up doing was overdosing by giving himself 54 units of humolog. Yes he got to hospital and yes we were scared but  he was o.k. My son has had the H1N1 virus and after mostly recovering from that got a nasty flu bug. We watched his keytones, tested him more frequently and he got thru it.

I think one thing that newly diagnosed parents do is come home and use the numbers the doctors give them as absolute. One unit for evey 10 or 1 unit for every 15 and they try to count carbs down to the each.

The numbers off the meter are not scorecard numbers but more of lottery numbers. They could hit anywhere. You son is most likely still honeymooning (producing his own insulin) so the numbers will bounce back to normal more often with little correction sometimes. You most likely worried about how you are going to measure what your son eats at the holiday. You have to estimate mashed potatoes, turkey, cranberry sauce, pie, (yes he can have pie if he adjusts for the piece using insulin - same as candy, peanut brittle, chocolates etc). At the holiday you don't have exactly portioned foods (thats O.K.)

After you have gotten the hang of it you will realize that you basically looking at two things. If he is high he takes insulin to lower. If he is lower he takes food to go higher. That is it. If he is too high (say over 300) he uses a keytone strip to check. 

You have already stressed yourself out with the holidays - shopping, wrapping, caring for your twins, you have a feeling of helplessness and that is all natural. Your first test is coming up - diabetes thru the holidays and you feel you have no experience. Remember if it is high insulin and low food - just test more often - sounds simple - maybe to simple after the pages and volumes of stuff you have read - well it is really.

If you need something to watch for then read the signs of high and low - when my son seems unusually obnoxious about something at a time when being so would not be logical then I have him test.  After his first low he knew what it felt like - if he thinks he is low - test.

More than likely he will be running high with extra food, soda etc so you could watch for those signs In a few days you will be past it. No other food event (picnic, 4th of July, Holloween  etc) will ever seem difficult again. The second flu, the second time away from home etc will be easier.

I don't know if it was good or bad but my son did everything I mentioned above (hot the H1N1 virus, bad flu, overdosed on insulin) within the first month of diagnosis. He also went to scout camp in the middle of the woods for 2 weeks with the boy scouts. He did fine.

Take this time to use any support you have - let someone else make the dip, bring the veggie tray - you are due a rest - take it.