Tuesday, September 15, 2015

Work Up Day #2

Today was not quite as busy as yesterday, but we were still out from 8-3. We started our day in imaging for a chest CT scan and to start a GFR test. Amazingly, the CT scan was successful without sedation! He lay still, and they had lights/images projecting onto the inside of the scanner for him to watch. They also let him add a sticker to the inside. Then he got to pick a prize from the treasure chest, and of course he chose a car! The next part did not go so well. They did 3 pokes, by two different people, one with ultrasound, and still couldn't get an IV that could have blood drawn from it. The test involves drawing blood every 40 minutes for 4.5 hours, so we were unable to do it today and it has been rescheduled for next week when he will have a central line to use!

 Next we went back up to the Journey clinic and met with the nutritionist, which was quick as we had met with her back in March. After that we met with some BMT doctors to go over a few things and have a quick checkup. I asked about his Hemoglobin from yesterday, and amazingly it was 9.1! Then after that he also offered some more of the lab results and let us know that his EKG was okay and chest CT was good other than some inflammed lymph nodes (which is not a surprise/not concerning as he has large open wounds on his upper arms). His WBC was still high, but he was going to continue on antibiotics another two weeks anyway. We will find out tomorrow for sure if we are going to continue with oral or switch to IV antibiotics. Child life gave him a stuffed animal with a central line for him to learn about the central line since he was so bothered by the stuffed doll they showed him yesterday! 

After that meeting we had a bit of a break so we went on a little drive to get out of the hospital! We went down to Minehaha Park, but did not end up getting out as Raul was grumpy and not feeling well. Then we stopped at a grocery store for some lunch before heading back for the last appointments. Raul got an echo, and hated the gel, but did well. He picked some star shaped sunglasses as his prize after his echo. Our last meeting was central line training, which was pretty quick. We had a while to wait in the waiting room for parent education, but were the only ones there so it was nice and peaceful! Then we came back to the RMH and Raul had a nap before we went downstairs for dinner. He was exhausted today, and his stomach is not tolerating his antibiotics well at the moment, so he is already back to sleep for the night!

Tomorrow Raul will be going to the OR to have his central line placed and get skin biopsies.

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