June 26, 2015 "Post Op"

Friday-(June 26)-After no sleep at all Wednesday night, Michael and I slept a couple of hours and showered in a motel room. (The Ronald McDonald House was full) We arrived this morning around 6:30. I was relieved to find that Rayden had a good night. They are still giving him tylenol for pain. Although he has been a little fussy he was actually trying to talk to us a little. He even took his ball when offered. This is more like it! When Nurse Craig and I tried to change his diaper we made a mess of the sheets. The best way to change the bedding was to get him out. This meant that I could finally hold my baby! I was super excited. Craig turned the drain off the ETV and gathered the cords to pass Rayden to me. He seemed as excited as I was to cuddle. Craig let me try to feed him. He really wouldn't drink much, only about 2 oz. He acted like his throat was hurting (probably from the breathing tube). All too soon it was time to

return to the crib. The IV blew due to the strong antibiotics so they had to put in another one. It's so pitiful. During the doctors rounds they discussed putting in a PICC line because Rayden has so many antibiotic treatments coming. They can't keep sticking him over and over because the IV's only seem to last a day or two. Not even to mention they have to draw blood every day and the vein with the IV in it can't keep up. They drew the first CSF culture today. At least they don't have to stick him for that. It comes straight out of the EVD reservoir. They will draw another one on Monday. He needs 2 negative cultures 72 hours apart. The Infectious Disease team does not know the speciation of his infection yet so he is still receiving both antibiotics.

10:30 am- The PICC team came to examin Rayden's arm with an ultrasound machine for possible vein entrance. After a long explanation and written consent they sent us out to get started. PICC stands for peripherally inserted central catheter. It is used for prolonged periods of time. Michael and I went up to the Ronald

McDonald room for a snack while we waited. When we returned they reported that they couldn't get the line in. They are going to try again on Monday. My poor baby!!! He always has such a hard time with IV's and this means they may have to stick him several times throughout the weekend!
6:00pm- So far they say the first culture is still negative. Praying it continues to be negative for the duration of 72 hours.