Day 1- Dosing - August 31, 2015

Is it in "vein"? I've been thinking a lot about this study, the outcomes, my kids, husband and especially a certain special drug named DMPK (lots of numbers I can't disclose) today. I'm not going to lie, today has been a little rough.

My plane left over an hour late last night, putting me in SLC just past midnight, running to the rental car place, and landing in my bed at the hotel after 1 a.m. When I got the car, though, Enterprise upgraded it to a cute little VW Bug that is way too fun to drive way too fast. Salt Lake is a ghost town on a late Sunday night, a little different than Phoenix! When I got to the hotel, I also found out my room there had been upgraded. I'm on the 7th and top floor of the Marriott, it's a secure floor, that you can only access with your key. There's a lounge that's open all the time with free food. So, I figure two upgrades can only be a good omen for a drug "upgrade", right?

My view from the top- Utah is Pretty!

I arrived at the hospital at 9 and started going over paperwork with Susan. I've been drinking water, like it's going out of style, to pump up my veins in preparation for the day.

Still drinking so much water, with my souvenir cup.

So, right after vitals, where my blood pressure was a shocking 100/55 and, 99/66 just now, (especially considering how stressed I am), a student brought in this bag of tubes. I'm not sure the picture does it justice, but the picture is worth a thousand drops of my blood.

My bag of tubes

The blood is all being taken out of an IV, so that's good. The nurse did a better job putting it in today. We warmed up the vein and, like I said, I tried my best to pump it up over the past few days. She took a couple tubes for "pre-dosing" and then, I got the "dose".

Susan with the tubes

There's no way to tell for sure if I got the drug or not. Dr. Johnson came to do a physical a few hours after the dose. When he made me make my fist and release it, he said, "well, you've still got myotonia." It was pretty funny.

So, here's the important thing for my myotonic mommy friends - yes, I'm talking about you: Jennifer, Suzanne, Steven (and Hamsa), Deanise, Lisa P., Lisa H., Narelle, Joanna, Claire, Kari, Trudi (and Sarah), Mikar, and our English friend, Sarah, and all you other brave mamas taking care of our special kiddos- this is what the drug is like, if I did in fact get the drug.  The injections sting, but I had one person and one person only on my mind. He is this perfect little angel, who I get to call "mine".  He gets shots in his stomach every other week and thinking about it still makes me want to cry. Anyway, the shots sting pretty badly. But, I thought can Aulton handle this? I'm pretty sure he can. Then, it starts to burn. Sarah assured me this is completely normal. They time the burn....7 minutes, still do-able for Aulton.  Throughout the day, the injection sites grew puffy and white around the actual injections, which actually didn't bleed. I got the shots about 8 hours ago and the tenderness has nearly worn off. Aulton's so tough, he's totally got this. I wanted to give all the parents all the info. about the actual dosing, so you can think about how your kiddo will do, when this drug works and they get to have it.

I feel like I got it. Dr. Johnson can't share how he feels and the nurses just nod, when I say I don't think saline burns or puffs up your skin or hurts for 8 hours. Dr. Johnson says we will find out who got it next summer.

After the injections, they drew my blood (about 7 tubes), then they drew my blood every half hour, then they drew my blood every two hours. I've had 10 blood draws today and I have one more to go, at 10:30 pm. Then, they will take out the IV. This vein is done, though. They keep coming in and flushing it and they push it down, while they draw the blood.

The vein a few hours ago.

Once it's out, though, I have one more blood draw in the morning. A 24-hour draw. I'm also doing a 24-urine collection. Also, a super fun part of the day.

First draw

Throughout the day, I have been on the phone and the computer. The study coordinator for the kids' study reminding me of the surveys I have to fill out for Aulton's study (for he and the girls, since they were controls). The surveys took me about 4 hours. They are a little depressing. I see all the stuff Lyla is doing and most of the questions on the surveys for Aulton I don't even know how to answer. If he had homework, would he forget to turn it in?  If he prepared food, would he be able to manage utensils? Would he write sloppily, if he could write? If he spoke would I be able to answer the hundreds of questions that are posed about that area of development? I don't know the answers, but I do know this is not in vain.

Symptoms Today:
tender injection sites
really, really sore inside of my left elbow from the IV
serious muscle pain in my left quad (not sure what this is because it s a new muscle problem. I'm going to talk to Dr. Johnson about it tomorrow).
crampy calf muscles
still have a pretty sore muscle biopsy spot, also on my left leg
neck pain
shoulders and back are ok today :)