Saturday, May 03, 2008

Captain Lunkhead strikes again!!!

I was SO ready for Carrie's all day appt at the TODAY study. I had snacks, the portable DVD player with 3 movies for Danielle, and toys for Sean. The road construction and city traffic had us getting there 15mins late but they're ok with that. The nurses all fawn over Sean and Danielle and how much older Carrie looks (we were just there last month lol). We register, Carrie's vitals are taken and they put an IV in...on the first poke! Whoohooo! Her veins are shot from her bone marrow transplant making them teeny tiny and almost impossible for anyone to get, even with the smallest gauge catheter. So we're doing great. They let her rest a minute and then take about 11 vials of blood for her fasting tests. Her endo comes in and asks...did Carrie take her medicine this morning? When I answer yes all mayhem breaks out. OOPS! She wasn't suppose to take and they can't continue with the test. *lunkhead! lunkhead! lunkhead!*

Then everyone is trying to figure out what to do. Can she come in tomorrow and do the test? If so they can still use the fasting bloodwork. Yes I guess we can (wouldn't have said that without the new car to drive in). Her endo is such a tenderhearted man. He worked and worked to make it so Carrie could go home with the IV and not have to get poked again the next day. I assured them I could do what was required to keep it flowing, I'd done it for a year with Carrie's central line. Somene mentions I'm brave and daring. I reply, no I do what I have to do. If someone says...flush this line twice a day or she'll get a blood clot that can kill her, you do it! After many discussions it's determined protocol and rules prevented her leaving with it....bummer.

So we do a few things like talk with the diabetes educator, her physical and dexa (full body x-ray). It seems her blood pressure is high again so she's now on a low salt diet. I'm not sure I agree with that since I've read for most people it's of minimal use, but we'll certainly try to follow it. (guess our start wasn't so great since we had BLTs for dinner on Fri) If things aren't improving soon she'll have to start blood pressure meds. :o( And as usual her thyroid is in question...waiting on bloodwork. And she was tested to see if the pesky protein is still showing up in her we may end up looking at her kidneys a bit more closely.

We head out the door by 1:00 and head to my parents' house. My mom has had the flu since last Thurs and is still not feeling good. It's been so bad for her and she's terrified that the little ones will get it so banned me from going over. I decide there is NO way I can be in the city again without stopping. She's over a week into it and shouldn't be contagious, besides, we'll hang outside with my dad while we're there. She was totally ticked off and in tears that I didn't listen to her. Ooops! Sorry mom! We visited with my dad for a few hours and head home, getting there before the 2nd trip kids get there...surprising everyone.

The next day starts the same as the previous one. They didn't think I was very funny when I started to tell them that Carrie ate breakfast! Some people have no sense of humor! ;o) They didn't get Carrie on the first stick this time and she scared me when they finally got the line in. She started getting all whiney and crying. She was groggy and said she had a headache. I'd be worried she was having a reaction to something except she didn't have anything besides sterile water. I figured she's on the verge of passing out, have her lay down and within 5mins she's doing a bit better. She drinks the 75 grams of glucola* and we're on our way. They took bloodwork every 1/2 an hour and I tested on my meter whenever they were done. Here's how she ran...

129...fasting (normal is under 110)
247...1/2 hr
298...1 hr (normal is under 140)
387...1.5 hrs
298...2 hrs (normal is under 120..nurse did this fingerstick)
229...2.5hrs (half way home)

UGH! It totally throws her for a loop all day. She's tired, headachy and just not feeling well. I hate having her do this and sometimes wonder if it's such a great idea. I just hope her sacrifice helps out some child in the future to get better treatment and control of their diabetes. My hands are totally tied and THERE'S NOT A STINKIN' THING I CAN DO TO MAKE IT BETTER! It's one of the most frustrating things with Type 2 diabetes, knowing if she had insulin those numbers could probably be taken care of, if not lowered a bit more quickly. She was starving from fasting and as much as I wanted to ban her from eating, I had to let her eat. I thought about making her run home to try and bring her numbers down but decided against it.

I had a OKAAAAAAAAY moment at the 2hr mark when the nurse did a fingerstick on her. He wanted to make sure she wasn't low before letting her go. (yeah right) He sees the 298 and says WOW! You're 298! I flippantly say...Gee Carrie! You'd think you had diabetes or something! (hope he didn't hear my eyes rolling behind him lol)

Carrie asked me later in the evening...when's the next time I have to do that appt? I said I'm not sure if it's in 6mos or 1yr. She says, GOOD! I hate that appt! :o( We are headed back in in at the end of the month though. They want to recheck her blood pressure and see she's doing with taking her meds.

*75g of glucola is equivalent to...
1.5 cups of fruit loops with 1/2 cup of milk and a cup of orange juice or...
1 cup spaghetti, 1/4 cup of sauce, and 1 pc of Italian bread and 8oz milk


truth said...

Wow, that was quite an ordeal. Is this like a clinical trial, research, or ????

Lisa said...

I'm sorry the appointment is so nasty for her. And I can only imagine your frustration. Mommys want to make things better darn it.