Immune Day 2

We were able to get to bed at 11:00pm. And let me just say, they could have offered me a spot on the floor and it would have felt like a feather bed-- I was READY to pass out! We had a great night. We were discharged at 11:30am, just in time for his blood work and EKG appointment at noon. The EKG went fine, with all three tests coming out normal, but the blood work made us both want to run. 

Like yesterday, his veins did not like what we were doing. The second IV that he still had would not draw blood, so we went into the appointment knowing he would need a poke. Praying that one would be enough. It was not. She was able to poke quick, but the numbing agent they use made the vein kind of freeze up, so we had to wait for a whole minute for the blood to actually be drawn. Things were going ok...and then the vein stopped giving blood. She manipulated the vein a few times (super proud of myself for not passing out both in that room and as I just typed the word "manipulated") but it just would not pull more. She told us she hoped they had enough. They did not. 

Because the nurse was trying to stretch the sample to fill all that they needed, she filled one of them only halfway, in hopes of not needing another poke. A second poke was done about 10 minutes later, after waiting for the Study Nurse to see if they had another tube they could find, since all of Caden's lab stuff is specially shipped from Pennsylvania. They did not. We were going to pop the top off of the last one she needed, if the poke produced blood. Three minutes of more manipulation of the vein on the other arm, and they called in another nurse. By this time, I was ready to cry. Caden has had been poked ten times. It should have been three at this point. I DO NOT do needles, so my anxiety skyrockets when my kids need to get poked. He wasn't freaking out, but he had made many comments that he wished he didn't have to be poked any more. Bless the Study Nurse-- she said that if the second poke of the day didn't do it, we would just have to be done. They did not get every bit of blood they needed. 

Not to worry, he has blood work at noon tomorrow. And the next day. And then IV needs again  on Tuesday. My goodness, I hope his veins can rebound fast. I'm not ready to go through this again. 

Dr. Hawkins called the lead doctor of the study (personally!! I love this man) to get more information about why Caden's reaction came about like it did. Apparently, the very first patient that tried this medication had the same reaction, although not as quickly. However, when they slowed it down, the patient did just fine. Because this Study is so promising, they did tell us more about it, but have told Caden many, many times that he has the right to pull out at any time. He told Dr. Hawkins that he really didn't want to, because of the side effects of both the reaction and Epi Pen, but that he was going to do it one more time. This boy amazes me with his courage and strength. He went through the day, not just watched, and he still wants to try again. So we are staying in Seattle. Tuesday is going to be a very pivotal day for The Boy in the Bed. Continued prayers for Caden (and his battered veins) would be much appreciated!!!

For now-- we are resting peacefully in our wonderful room at the Ronald McDonald House, watching  The Carbanarro Effect, with the sound of crunching chips and snacking coming from my right. I'm the luckiest girl in the world tonight.