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.
Things calmed down somewhat but I don’t remember all the details. We were to have a diabetes educator come in the next day to help us learn all we needed (to at least be able to go home). Her initial level that day was 799 and I believe her A1C was 14.5 which meant she had been average 300-400 for the last 3 months. This is all still new to be so please forgive me on terminology.
The next day the educator helped us to understand what was going on and we even started drawing the insulin and giving test shots on an injection cushion. I actually started giving my daughter her shots that day too. She gave herself one that evening.
We were moved out of PICU and into a regular room. The next day we learned how to use the pens instead on the syringes and we were discharged with some instructions.
Looking back (only about a week), I am still shocked how quickly things moved. We only spoke to her diabetes endocrinologist once.
We are still working out dosages, I report them thru a website and the doctor/nurse can message me changes. But my daughter is coping so amazingly well. She likes to do her sticks and shots herself (I supervise and occasionally give one in the back of the arm). She like to figure out the counts and dosages, she loves math so that helps I’m sure. She is just so brave and wonderful that it actually breaks my heart because this sucks. She doesn’t deserve this and it’s forever. I am scared for her but want her to live a live without the fear and with hope and it’s just so hard. I pray for her and ask for others to pray for her. I would take her place in a heartbeat but I can’t.
I had an evernote with all the issues she has had since Christmas…there were 12 items on it.
Someone posted a Diabetes awareness cartoon on Facebook, she had almost every symptom.
I was in denial.
I made her fast before the appointment anyway.
At the Dr. I showed him the list and the cartoon. I asked for a test. After the urine test, he said we should go to the hospital for better blood work. He mumbled for me to stay close by because we might need to go to anther town later. I thought he meant to see a specialist. After the blood work (and waiting too long), we went to the mall. I got my son a hair cut. My daughter ate Chinese (general tso). I let work to know I would be late or not in depending. An hour and a half later, I got the call – we need to go, she needed to be admitted to the hospital in the next town (children hospital with diabetes educators). It’s Type 1 Diabetes.
I drove with my daughter (my mom and son were in the car behind us). On the way there we are crying, praying, calling family and friends, (she was texting too). I knew I should be strong for her, I felt guilty and like it was my fault for being a lazy mom. I knew nothing about diabetes and nothing about type 1. At the hospital, it was a whirlwind, I don’t think they realized we knew nothing about diabetes for the first hour. There were questions I could not answer and thing I just didn’t know. She hating getting stuck with the iv, I was worried about how she was going to handle the shots – FOR THE REST OR HER LIFE!!!!