parenting

TGIF

We’ve almost made it through the week.  I pick them up tonight.  I am still not happy with the level of communication with my daughter and the nurse but I did come to accept it.  If was there a problem (lows) I did hear from them and she never went high except when they waited a little too long to give her dinner insulin one night.

I just can not wait to see either of my children but to especially have my daughter home where I can check on her myself (and give both of them lots of hugs they probably don’t want). We have two weeks then she is attending another camp just for kids with type 1 diabetes.  That one will have no communication from what I can tell but there are drs. and nurses and she will be around other kids dealing with the same issues and learning lots of things. I think it will be a great experience for her. Hopefully things will be better for me next time since the care level should be higher.

Not a happy camper

Saturday was the 2 month dx anniversary.

Sunday was check-in at camp. (not a diabetes camp, a 4-H they have been going to for a couple of years that is an overnight camp but is only about 20 minutes from our house).

I was stressed, tense all day worrying about forgetting something.  We had done early registration so I could speak to the coordinator and nurse ahead of time.

However we get there and they don’t have her in the correct cabin (the one where the nurse is who agreed to check her at 2am).

We go through the ‘fast’ line since we registered, the assistant nurse was supposed to be there, she wasn’t.  They did call to make sure she should be in the cabin.

I went back to the cabin to talk to a counselor and they take me to the nurse I had spoke to before but it was rushed.  I told her I needed the numbers every time to give to the dr.  Her daughter sees the same dr. I thought she would understand how terrified I am and that I just needed a little reassurance, I guess not.

I briefly heard from my daughter last night before bed (9:50pm) that she was low, had some juice was coming back up and ate a snack.  nothing this morning, no updates with numbers through the night or this morning.  She was supposed to text or update the app and there is nothing, so I am freaking out.  I don’t have a way to contact them other than my daughters’ phone which she is supposed to have and isn’t responding to anyway.

More to follow…

UPDATE:
So I did just hear from nurse. No one checked her last night.  Said it was a misunderstanding that they thought she was going to wake herself up to test?!?!?! Hello, if she’s low she can’t wake up and if she’s low she will need someone there to help her get something and stay up to re-test. not really a responsibility she should have to do herself, and I am so frustrated with everything!

I am going to check with them later to see if someone is willing to get up with her if not I am going there to get her for the night.  This just suck for her and I am still not a happy camper.

Learning from mistakes

Last night I flubbed up and ran out of Levemir at her game (only had 8 units and she needed 24, plenty at home just didn’t check units in the pen). I was wondering what to do…I had planned to give her the rest once we got home but it was about 3 hrs later.  I did get some advice that was to not give her any more Levemir then just check for highs during the night and give a correction with her sliding scale.

Since she always goes low, I went with that.  I checked her at 1:45 and she was 177 (the night before with no exercise and regular Levemir she was 180) so I figured we were good.

Checked with the dr. office this morning and they said it was fine.  We could have given the extra but it was ok.

There are so many variables and guessing it’s really scary but we just keep on going, doing the best we can.

Also, I meet with camp nurse yesterday for her week at camp.  She seems very knowledgeable and I was pleased with our discussion.  She is willing to get up and check her once a night so I am so grateful for that. The dr. office said is wasn’t necessary but I didn’t feel comfortable with that since she is so newly diagnosed and we don’t know how the daily activity level and heat will effect her.

Repeat

I feel like I’m on repeat, my daughter had quite a few nighttime lows due to softball games last week.  So losing an hour or more of sleep for multiple days is messing with me.

Waking up wondering what number I’m going to find, correcting with juice and waiting, trying not to fall asleep, then after recheck trying to fall asleep and not think about everything.

No softball yesterday but she went to the in-laws so the worry was still there but different. However her numbers rose during the night instead. Not quite what I expected but makes sense.

More softball later this week, so we’ll see how that goes.  She also has camp coming up in a few weeks, I am hoping to talk to the nurse in charge sometime next week.  The nighttime lows are my biggest concern while she’s there.

Game play

I think I got spoiled by the prompts for DBlogWeek, especially since I am new to blogging.  They really helped focus me on one topic.  Lately my thoughts are all over the place.  Sometimes I feel like I am getting information overload and sometimes I still can’t find the answers I am looking for.

My daughter is thriving and doing so well. We are signed up for diabetes camp next month and things are rolling along. She is playing softball and has four games this week.  Last night was the first and it went as well as it could. No lows during the game.  Actually she was a little high after.  Before bed she was still just over 150 but at 2am she was 74. She drank her juice and her recheck was 106.

There are times I feel like I am playing a game that I can never win and the fact that her life is at stake scares me to death.  I still don’t know all the pitfalls and don’t want to get caught up in the doom and gloom aspects but I need to be aware of potential risks.

And I don’t want her to worry about those things because she will and I think that’s where the mental health thing comes in for those that have been dealing with this longer than just the few short weeks we have.

School’s Out

Summer is here for my kiddos.  Not much planned for the next couple weeks but then there is camp later next month.  I shared a summer plan with them where they do chores, reading, and exercise each day they are at home for about 15-30 minutes each. They were not happy.  They probably won’t have many days at home but I thought it was worth a try.

My daughter has been doing great, but still having some afternoon lows.  When I showed her the plan, she said “Don’t I have enough to deal with?” I told her that she still has to learn some other responsibilities and not  to use having diabetes as an excuse.

My son just had tears streaming down his face and said I ruined summer before it even started.

Being a parent is great!

A Little Low

After I wrote about the fear of the ‘low’, she had a low or lows…

The first wasn’t a true low but was the first time she felt sick. It was a school and she was only 94 but she had never going below 100.

The next day she went to 84, same time.

Now she is regularly going to 75-85 around the same time.

The other day she went to 77, ate some carbs then wasn’t hungry before she had softball practice.  Then she was high 260-300 after practice before she ate and we covered both her carbs and used the sliding scale. I knew it was too much but had no instructions on how to handle the situation from her doctor.

I set my alarm for 2am to check her just in case.  I woke up at 1 and fretted about it for half hour before waking her up, it was 68.  She ate some smarties and rechecked at 153 after 20 minutes.  It wasn’t scary but I was glad that I checked her when I did.

The doctors have instructed that if she is playing softball to not use the sliding scale and to just cover carbs.  She doesn’t have another practice until next week so hopefully the long weekend will be uneventful. However she is staying two nights with my mother in law and I am just a little nervous.  She is capable but it’s normal to feel nervous right?

One Month

Today my daughter said ‘It’s been a month.’ 

Hard to believe and yet we are still just so fresh and so new to everything.  We have sought out support (blogging, the DOC and attended the JDRF walk) but still sometimes it feels very alien and lonely.  She is such a trooper with everything and yet I still feel like I am waiting for … something? 

I just want to wake up and all this be a nightmare and not real. 

One month later it’s setting in that that will not happen. 

Day 5 DBlog Week: Diabetes Life Hacks

This week I’ll be participating in D Blog week.

Today’s topic:

Diabetes Life Hacks: Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

I’ve been trying to come up with something for this, but three weeks in I have can’t think of many hack we would know. A few things we do that may or may not be right and work for us in the long run:

  •  Stock up on single serving peanuts for snack at school (11g)
  • I bought a plain black crossbody purse for carrying supplies but she prefers taking it in her lunch box to school, she will have to use the purse for field trip next week and other times we go out.
  •  Not to overdo pepperoni (or any free proteins)
  • My daughter carries her log book with her too so she has all her number with her, I log them daily to the dr./hospital site.  We’ve been looking for a good app to do this but haven’t found one yet.

Otherwise we just keep plugging along.

I will enjoy reading other hacks though.

 

 

 

 

Day 3 DBlog Week: What Brings Me Down

This week I’ll be participating in D Blog week.

Today’s topic:

What Brings Me Down: May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

Since we are only 3 weeks in, there isn’t a lot I can add to the mix except to say that I am just sad a lot of the time if i really stop and think about it.  I am mostly a positive person and try to take things one day/step at a time.  I try to rely on my faith in Jesus also to know he will be with us and bring us through.  However, I can be an extreme worrier too.  I can easily let my innermost thoughts go to the most extreme and worst possible scenario. I rarely share these thoughts with anyone so no one really associates that with me, so that’s good I guess.

One thing with this new diagnosis is that you have to think of the day-to-day stuff but we haven’t talked much about the long-term, potential issues.  I have read a few things but it’s really hard to know how much we should worry about them right now since we are just starting to get the hang of things.  My daughter has never been below 100, so we have no idea yet what the lows are like.  That really scares me because right now I feel so scared of that unknown.

The other thing that gets to my daughter is that they are constantly changing her dosage to lower her levels a little at a time.  Every time they increase her dosage she gets upset.  I keep telling her it’s nothing she’s doing wrong.  Yesterday was our first follow-up with the doctor and he told her the same thing and explained more why the changes are occurring.  I think that helped her to hear it from him too.

I do think she is a strong, brave girl but I am worried that she will be prone to anxiety and depression.  She was starting to be depressed before diagnosis.  I think right now the knowing helps. However she likes to be in control and I don’t think that she will like the fluctuations that come with Type 1.

Right now,  I am just telling her that I am in it with her and supporting her.  We just have to keep doing the best we can and keep praying.