Friday, July 27, 2018
Reagan had a follow up with her EPI-743 study doctor Wed in Houston. Mike took off and we drove there and back the same day (as we always do). It certainly makes for a long day. We left at 8am and didn't get back til 7:30pm! We were so lucky that Reagan was in a good mood and handled everything like a pro. We had a long wait for the dr and then two missed sticks for her blood draw (and left without the EKG), it was kind of a pointless appointment. The only thing that we really took away from this appointment was how extremely serious her hemoglobin incident was. Her doctor said the level she had gotten down to was barely compatible with life. So SO scary. He was also pretty adamant that they need to figure out what caused it. Hopefully they do, but for now everyone is still scratching their heads. Today Reagan had her iron infusion. We were hoping to get the missed labs from the other day drawn, but no surprise, they had a hard time finding a vein and once they did, they were afraid to draw from it and blow it. So no labs...again. They were able to do a quick CBC and her hemoglobin levels had gone up to 10.3 (and that was even without the supplemental iron). I asked if she still needed the infusion today, but they were insistent that she needs to build up her reserves and it was necessary. The iron infusion itself went smoothly. They watched her for a while afterward to make sure that she didn't have an allergic reaction, but she was fine. We'll go back in two weeks from now for a second infusion. Hopefully her numbers look good. Thank you for keeping her in your prayers.