Yesterday was Zoe’s “Official” 5th Birthday….but she thinks it was last Saturday. We celebrated it early for several reasons….Scott left Monday for Tulsa on business for 2 weeks and yesterday she had the 2 hour blood glucose test w/ an i.v., we didn’t want her to relate another birthday to the hospital. I doubt she remembers her 1st birthday, but, it happened while in hospital for 2 weeks when she was diagnosed.
So, her birthday was great! She had a Princess cake and Princess presents. Today she even received a wonderful present from Kaylee and her terrific grandma(Kayleesgrandma)!!!
We got to the CRC (Clinical Research Center) at Wolfson Childrens Hospital (Zoe’s normal hospital) at 8:30 am…she was NPO since 9 pm the night before. I had put the EMLA cream on 4 areas of her arms. The nurse she had (who is in charge of the CRC) was awesome! She was able to get a vein first try! Zoe still had a lot of anxiety before the needle going in….but when she realized it was over and didn’t hurt…she looked up from crying, smiled and said, “So, do I get stickers now???” We all laughed.
Then the blood drawing started. That was a lot of blood. You can see by the pictures how many tubes there was. They used everyone of those. After they got all the blood they needed for all the labs, they drew the first draw for the glucose testing. It is called a ‘fasting’ draw, fasting being because she was NPO since 9 the night before. The nurse put it in the tester, I looked at her, she said, it’s high. Uggghh.
Now, she had to drink the glucose syrup. That went a lot better than I thought it would….I used an oral syringe, gave it to her like a medicine. She got it all in within 2 minutes! Then we wait for 1 hour to take the next draw. Her brother, Austin, our oldest daughter, Tara, and her boyfriend came to be with us, so that was a nice distraction for Zoe.
Next draw……she said, it’s high. I think I wanted to run in the bathroom and scream, cry, kick, you name it. I had fully expected to go in to the CRC, do this test just as a ‘ruling’ out test. I really did not think she would test high.
Her last draw was borderline. I said, “So, where does this leave us???” She called Zoe’s clinic, who said they will wait on all the other blood work, like the insulin levels, IGA levels and A1C levels. Then all her docs will discuss all the results and decide what/if there is anything that needs to be diagnosed or decided on. The blood work will take 2 weeks. So, the waiting has begun.
Tomorrow morning Zoe and I have a short meet/greet/ speech at a highschool for fundraising for our walk. Hopefully I can do this gracefully without crying.
Well, I need to go read a book to Zoe and cuddle her into bed…..
Good night all….take care of you and yours………
Jada
There may be a silver lining here...
ReplyDeleteMy last glucose tolerance test I came back okay on my fasting numbers but high borderline in my 2 hour post. This plus an a1c of over 7 made it so that I started to be followed by an endocrine. Because we know that i'm not handling sugar well anymore, we can adjust to so that the damage to it is slowed. I cut out regular soda, made sure I was pairing carbs with fat or protein, and started on a type II pill (januvia) that helps my liver make more insulin and process insulin more effectively. Because I'm doing this I'm slowing down the damage, making it so that I can hold off for longer on needing insulin, and also when I changed my diet and started the pill I gained weight, another bonus!
As much as I'm sure it feels like the world is crumbling remember that things are unfolding as they should. You're doing fundraising for GS now, so you've got some first hand, current 'stories' for anybody who will listen. I know with each curve Trevor's CF experience has taken I've had to "build stamina" (basically, get used to the new routines, meds, issues, etc.). It's almost like a grieving process each time. Give yourself time to adjust and keep going forward...
ReplyDeleteWe're thinking of you all in Maine.
Christie
www.teamtrevor.org
Jada, so sorry to hear her first levels were high. I agree with Talana, though, maybe this will turn out to be good. Hopefully everything else will turn out A-OK, and Zoe will be in the clear. This next 2 weeks will be a long wait, but at least you have some distractions with your funraising efforts. Reilly & I will be thinking of you!
ReplyDeleteI had my glucose challenge yesterday, also.
ReplyDeleteI'm so sorry that Zoe's first draw was high. I hope the rest of the bloodwork turns out much better.
That was good thinking to celebrate her birthday early!
Happy belated birthday to Zoe!
ReplyDeleteHAPPY BIRTHDAY ZOE!!
ReplyDeleteJada, hang in there. Maybe the results will come back good! Try not to think about it, that's what I do.
M
Jada, thanks for the nice comments on my blog. It was nice to take a break for a few days from the CF world and have a "normal" weekend. I'm really sorry your talk at the school didn't go as planned. It really hits me unexpectedly too. At the first parents meeting at Seamus' nursery school, I stood up and wanted to tell the parents a little about CF and I couldn't get two words out before I started bawling.
ReplyDeleteHappy belated birthday to Zoe! I hope her glucose results come back soon with good news they can come up with a good plan to help her gain weight.
Seamus has had so many endoscopies because he has multiple GI issues that took a year and a half to be fully diagnosed. He started vomiting blood at 6 weeks so they did the first one to determine he had a milk and soy allergy. Then he continued to have problems with vomiting and DIOS so they kept doing all kinds of tests and putting him on new treatments. None of them really worked, including stomach surgery, so each time they would do another endoscopy to get a better picture of what was going on in there. Things have been better this last year so hopefully he won't need many more of them.
I'll be thinking and praying for you, Zoe and your family.