July 29th

14 days post surgery they placed a NG. Adi gagged at 30ccs an hour. We had to turn off the pump at least three times the first night. Dr. Rollins came in and told me to figure on staying another week until she was able to tolerate feeds. Val came up to stay the night so I could go to work. The next day when I got back the attending doctor came into the room to inform us we were being discharged. It is the Grandma touch that got us out of the hospital this time. Unfortunately, we had driven up in separate cars and Adi still didn’t look good enough to me to feel comfortable driving with her alone. I think I was just having flashbacks from leaving the Wednesday before surgery and having to come right back after she started with her seizures. I refused to leave until I felt Adi was looking better. I left the next morning, 7/31, with Adi still gagging and a prayer in my heart. Scott had bought me a mirror for the car so I could have an eye on Adi at all times. Talk about being glued to the mirror =).

July 17th night- July 18th

To get everyone up to speed- Adi had a blood transfusion through a peripheral IV line in her foot. We prayed that the line would last long enough to give her the blood she needed. The IV team had come in and placed the second line in her hand so that they could run her TPN at the same time and also hoped to be able to use that line to place dye in when they would place the PICC the next day. We didn’t have any other options for veins, all of them have been exhausted- everything worked out. A few minutes after the blood transfusion finished the vein failed. What a blessing… all we needed now was for the vein in her hand to survive the night. The next day the PICC was to be placed. Dr. Feola, was the radiologist who found that Adi’s stomach had herniated again on May 31st, placed about three of her tubes, two upper GIs, and now was going to place the PICC. I was nervous about her being given more drugs to sedate her body and that I couldn’t be at her side really annoyed me until I new it was Dr. Feola performing the procedure. The procedure was to take up to two hours… I left and got some food from the caf and was back in 15 mins. When I walked back to the hall where I would wait out the rest of the time I saw her cna with the crib in the room. She was done and I counted my blessings. I walked into the room and grabbed Adi. Doctor Feola looked at me and said “that went great.” Then he added that he felt like he was her personal radiologist. How many people have one of those.
The PICC made blood draws easy because there would be not more poking. Everyday she was being poked for blood so they could make up her TPN. The screaming and seeing her not feeling well really wore on me. I started being unable to watch. I would walk the halls and as I would come back and hear her crying I’d start crying. I became a big boob at watching my baby cry but finally the PICC was going to stop the crying.