I have written before about our daily schedule but that just looks at the time frame. Today I am putting it all out there. I have taken a page from Julia's logbook (10/28/11) and I am going to share with you her blood glucose (BG) readings for the day. Every time we get a reading, she gets poked with a needle.
7:03am BG 68 Julia wakes up saying she is feeling shaky. That is how she describes a low.
7:25am BG 123 Recheck and before breakfast test combined. This is a much better start to the day.
10:07am BG 50 She told her helper she felt shaky. This is at school during class. I get a text with this info.
10:24am BG 125 Recheck and recess time check. I get another text with this info.
11:48am BG 83 Lunchtime check. Another text for me.
4:09pm BG 54 Julia is feeling shaky again. This is at home.
4:24pm BG 111 Recheck - back in range
6:05pm BG 251 Dinner time check
9:53pm BG 307 Evening check. This is high. We give more insulin and will recheck in an hour.
11:00pm BG 370 Recheck - That doesn't seem right.
11:02pm BG 372 Recheck - Change insulin pump site in case of poor insulin delivery
12:05am BG 340 Recheck to verify new site is working - not coming down as much as I would like
12:31am BG 334 Recheck still coming down just slowly maybe it is working?
2:00am BG 383 Apparently it is NOT working. Another site change and insulin dose given.
3:01am BG 262 New site working. Time for some sleep.
8:29am BG 122 Let's see what today brings...
Julia's range is supposed to be between 70 - 130 during the day and 100 - 150 overnight. We have days that are terrific and in range. We also have days that are horrendous and nothing makes sense. Just because she is pumping and testing regularly does not guarantee that she will be in range. Everything can effect her blood sugar. Being excited, being nervous, physical activity, lack of physical activity, anything can send her low or high. We are told that a number is just a number not a grade but it is so hard to not look at the meter and think that it somehow reflects on your ability as a parent. Seeing a random 300 pop up can be so frustrating or stubborn highs that won't come down. And the lows. Lows are so scary. Hearing her say she feels shaky, seeing her get so pale, I hate it.
I know.. My stomach drops when I hear those words, "I feel shaky" and can hardly stand to look at the meter when it finally beeps the number!! I have the same sidebar design on my blog. Thanks for sharing :)
ReplyDeleteThanks for sharing the logs. Always interesting to see what's going on with others...
ReplyDeleteI can't imagine or pretend to imagine how you must feel. Apparently, God gave Julia to you and Bubba because he knew what amazing parents you would be throughout this unfair journey with her. I continue to say prayers every night that a cure is on the arise. Kiss sweet Julia and Joseph for me. In case you don't realize it, you are an wonderful mother. xoxo
ReplyDeleteGreat idea to share the logs! I will have to do that sometime. People don't realize all that goes on during just ONE day....and you can't explain it in a 5 minute conversation. :)
ReplyDeleteI can't even think of anything to say... I hate when my kids have flu and they get pale and shaky... I would be a nervous wreck if it happened ALL THE TIME... I guess I want to say good on you guys, good job NOT just being mom and dad, but being super mom and super dad, because I know I couldn't do it. I guess you may have said that too before you knew you HAD to... good job rising up to the challenge... and you win all my admiration for today. All of it. Seriously...
ReplyDeleteits a huge job, and thats just a snippet of the day really, it focusses on the numbers and the treatment, what it doesnt include is the REST of the thought and effort, planning, stocking, watching, worrying.... that emotional investment is huge too. great post.xx
ReplyDelete