We have the pump however it’s been sitting in the box for 3 weeks now with no scheduled training. It’s a bummer. When we got it, my daughter and I went through and checked it all out. We did some of the online training one Saturday (about 5 hours) and then the waited to hear about the in-person training. And waited. And waited. I have reached out through various avenues (calling/emailing the last rep I spoke with, emailing the Dr. office for advise, reaching out to Karen at http://bittersweetdiabetes.com/ for advise). I have heard from some contacts in the company but am still waiting to hear from the trainer. So it’s a little disappointing and it’s hard to explain to my daughter to be patient when the pump is sitting RIGHT THERE. I told her it would take a while but I just wish they would have given us a timeline. Not hearing from anyone for over a week when you expected only a couple of days is frustrating. I hope to hear something firmer by Monday or we might need to rethink working with this company and try something else.
type 1 diabetes
Pump approved
We went ahead with getting the blood work done and today I found out my daughter is approved for the pump. I am excited for her but also nervous. We will be getting the supplies within a week and then training starts. They said it could take close to a month to get the training done. She are getting the Medtronic 530g with sensor. I am more excited about the sensor (cgm).
One month later
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.
Make it work
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.
Sunday fun-day?
So the kids came home and we all survived and rested on Saturday…then I took the kids to a water park on Sunday…
So we get to the water park, 2 hours+ from home and my daughter goes to check her blood glucose level…’Mom you forgot the lancets‘ – hmm, well now ‘I’ didn’t, ‘we’ did. So we improvise and use a pin needle to pick her finger, better to have forgotten the lancets than the needles, right?
She was running high after a week of running in normal/lower range at camp.
All was going good until my son wanted dipping dots for a snack. I asked my daughter if she was hungry, she said no. I asked if she cared if brother got the ice cream, she said yes. Well, what to do? I looked up the carb count, 17 for vanilla. Doable with all the activity of the day. We get to the stand, no vanilla. So we go with birthday cake and I get a bigger one to share with her (it’s hot, ice cream sounds). I check the carb count again, 22 still maybe fine. Then she wants to eat the whole thing and take insulin (which she never ever wants to do). I ponder and do some Googling and can’t see that taking insulin is a good idea. She always runs low when active so I thought it ‘might’ be ok and we’d check her in a couple of hours anyway.
Two hours later we are preparing to leave and she’s really tired, so we check and she’s 69 – what? So low after ice cream….didn’t really expect that.
Eats some smarties to correct, recheck later and is in range.
We stop for dinner about an hour later and still in range.
We eat and I use her sliding scale for game days since she was in the water and up and down steps, etc.
2 hr drive then home pre-bed check is 378!!! What? Recheck in 15 minutes is 387. OK not sure what to do but no snack since tired I let her sleep only because on active days she goes so low. The 2am check is 161. This morning 110.
So far today, she’s in range.
Another challenging puzzle, did I do the right thing? If she would have been high at 2 am I might have given insulin then but we have never been educated to do that. Also if she was not so active I would not have done many things the same.
Have I mentioned that I hate this type 1 guessing game?
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.
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