A little over a week ago, we went to Children's Hospital LA (CHLA) for the next phase of TrialNet for Livie after receiving the news about the positive autoantibodies.
The next phase involved an oral glucose tolerance test (OGTT), A1C and genetic testing = 10 hour fasting, a super fun IV poke & nasty sugary drink.
Livie was a great sleeper until she figured out how to crawl out of her crib, which was right around the time Ella was diagnosed. The only way to get her to go back to sleep was to hand her a sippy of warm almond milk & bring her in bed with me. Hey - don't judge. I was emotionally and physically exhausted and did what I had to do to get some sleep. And 8 months later, I have yet to break this new habit.
Enter the need for 10 hour fasting. Livie woke up the night before her test at 4am wanting...warm almond milk. Since we couldn't give it to her, she never went back to sleep. Yeah, that's right folks - up at 4am on day of big test. We left our house around 6:30 am and got to CHLA around 8:00am.
We slapped some numbing cream on her while filling out paper work and then took a 15 minute walk trying to convince her that this was super fun and to keep her from asking for food.
The next phase involved an oral glucose tolerance test (OGTT), A1C and genetic testing = 10 hour fasting, a super fun IV poke & nasty sugary drink.
Livie was a great sleeper until she figured out how to crawl out of her crib, which was right around the time Ella was diagnosed. The only way to get her to go back to sleep was to hand her a sippy of warm almond milk & bring her in bed with me. Hey - don't judge. I was emotionally and physically exhausted and did what I had to do to get some sleep. And 8 months later, I have yet to break this new habit.
Enter the need for 10 hour fasting. Livie woke up the night before her test at 4am wanting...warm almond milk. Since we couldn't give it to her, she never went back to sleep. Yeah, that's right folks - up at 4am on day of big test. We left our house around 6:30 am and got to CHLA around 8:00am.
We slapped some numbing cream on her while filling out paper work and then took a 15 minute walk trying to convince her that this was super fun and to keep her from asking for food.
Yay! CHLA is super fun!
We headed back up to the TrialNet room and Livie instinctively knew that no fun was going to happen in this room. Time for the IV.
We wrapped a screaming Livie in a sheet like a little burrito with only her arms exposed and it took 3 nurses and Dad holding her down to get the IV in. Thank goodness we put numbing cream on both arms because the vein blew in the first arm. I willed the nurse to get it the first time on the next arm and thank goodness it worked.
Obviously Livie was pretty miffed about the whole ordeal and was screaming (I mean SCREAMING) and trying to rip the IV out and the study coordinator said, "If she doesn't calm down we're not going to be able to do this" at which point I thought to myself that we did not come this far for nothing and come hell or high water we were seeing this thing through. I did what any good mother would do: I bribed my kid.
I took her to the first floor of CHLA and brought her into the pink sparkly gift shop and told her she could have ANYTHING she wanted.
"I want the dragon!"
I turned around to see a life-sized stuff dragon at the entrance of the gift shop and promptly told her it wasn't for sale. Surprisingly satisfied with this answer, she settled on 2 small Barbie dress-up dolls.
Happy, and starting to show signs of being extremely tired, we headed back upstairs to the third floor and offered her the red, nasty sugar drink which we called "yummy fruit punch" in her sippy cup. She sucked it down like a champ (yay!) and fell asleep in Dadddy's arms. Thank you, Lord.
She slept through the next 2 hours and 4 blood draws.
I have yet to get the results.
I do know that her fasting was 88 and her 2 hour BG was 142 according to my accu-check aviva.
Not bad, but not great, either.
I have mixed feelings about getting the results. I want them, because I'm sick of waiting. At the same time, not knowing affords me the ability to live in ignorant bliss. Because until I get that phone call, I can hope that maybe all of her autoantibodies will miraculously turn negative or that she does, indeed, have the protective gene, or there was some big mix-up with the original blood test results and she never had autoantibodies to being with.
What a little trooper. Please tell her I'm proud of her.
ReplyDeleteBribes work...that's what their there for! ;) And considering what she had to endure, there is absolutely no judgement here! LOVE that she took the 'it's not for sale' reason! :)
ReplyDeleteLove you guys!!
Been there, done that. It was 3 OGTTs before she failed one (six months apart) and another 3 months after that she was diagnosed. The waiting and hoping and then knowing it was coming was the worst. However I console myself with the knowledge that she never went into dka and her a1c at dx was 6.4. You are doing the best thing possible for her.
ReplyDeleteI've been reading your blog. As soon as we got the positive autoantibodies I searched for someone who had been through the same process and found your blog. You have no idea how much it helps reading it and reading your feelings and your experience. How's she doing?
DeleteMy D daughter Maddison was dx'd at age 6 and she does NOT have ANY auto-antibodies! Keep your head up, and hope for the best. Always know you can defeat the odds! ((HUGS))
ReplyDelete