We do have a date set for training. It was hard to find a day that might work but hopefully we’ll get it going. I am still a little nervous and apprehensive but my daughter is excited so I hope it all goes well. She is playing volleyball so it’s going to be interesting to see how we work it out with that activity.
I think the reason I am nervous is I feel like we are in a good routine and managing thing so well that now we have to ‘relearn’ some things and do things differently. I have also read about some cons with the inserts and sensors and am nervous about it being more painful, falling off, and the tubing being a pain. We don’t do the CGMsensor until a couple of weeks after starting the pump. I also would love to be able to hack it but the CGM in the cloud movement seems to work with the Dexcom better. I would love to be able to see her numbers when not together.
So I am hopeful and we will see how it goes.
I have sadly been remiss in writing for a month now. Here is an update:
CAMP – had a blast, made new friends, wants a pump now
BEACH – was great in many ways but numbers ran high the whole time (with maybe 2 or 3 hypos). But fun was had by all. Jelly fish got both kids but wasn’t as bad as expected in the long run.
Then there were two weeks between vacation and school. It went by so fast but we did lots of resting because once school starts, sport start and then there is no rest for anyone.
Also had our 3-month with the endo. Her A1C was 8%, down form 14% at dx 4 months ago. My daughter really wants the pump, the endo was ambivalent said it probably wouldn’t really help her control too much since it was pretty good. However the choice was really up to us.
Again, my daughter really wants it but I am hesitant. I do understand that there is some more ‘freedom’ as far as schedules and eating but then there is something connected to her all the time and I just hope it doesn’t bother her too much. Plus I have read so many pros and cons that I just don’t know – but I do think it’s really up to her so we are moving forward with insurance inquiries.
We are leaning towards the Medtronic. Any input?
One last thing, school started today. Still no 504 plan. I called the nurse and counselor from last year and finally had to call the Principal. We should be having a meeting next week. I took the supplies and some handouts for the teachers to the open house last night. I am not really worried since we are a small, rural community with a LPN there everyday but it is a little frustrating to not get this taken care of as expected.
I am really slacking on my posts. It’s hard to write sometimes when everyday feels like a repeat or just not having anything new to say. However the truth is I just don’t make time for writing.
My daughter has been doing great since camp 1. Softball ended last week. They came in 2nd in the tournament and got trophies anyway. We went to a local fair and she rode some rides with friends. I felt like a stalker following them, but it was unplanned and I wanted to be close if she felt low. There were other parents doing the same without the diagnoses so that helped.
This week she is at a camp just for Type 1 kids. I think it will be an awesome experience for her and can’t wait to see her and find out. The camp has the BG checks built into the schedule and wake them up twice during the night (my biggest grip from the other non-medical camp). One of her doctor’s is also there so that helps my anxiety level too.
The day I pick her up, we are headed to the beach. The vacation was planned prior to dx so not really the ideal but we’ll make it work. I am looking forward to our vacation, we have lots of down time planned so hopefully it won’t be too much.
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.
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…
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.
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?
This week I’ll be participating in D Blog week.
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.