Sunday afternoon we took Reese the Aquarium. We asked the Guest Services folks at the hospital if they could help us get discounted passes and they gladly made arrangements for us. To our surprise, when we arrived we found out that the passes were free. That was a huge blessing! Reese had a great time. Later in the evening we were in the car and he said, "Daddy, thank you for taking me to the 'quarium. It was awesome!" (His teacher sent me an email last night and said that he talked about it at school also.) It was nice to be able to spend some fun time with him in the midst of all the chaos.
Monday, however, was not so pleasant. We got up and packed Reese up. Bryan took him to meet Jordan and sent them on their way back to the upstate. The nurses prepared us and Brinkley for his RA line to be removed. This was one of the last ones standing in our way to being able to hold him. They got everything prepared and asked us to leave. We went across the street to a cafe for lunch. As soon as we sat down I realized I had missed three calls in a row (12:07, 12:08, and 12:09) from Jordan. I called her back to hear Reese answer and let me know that he is not a fan of the long ride between Charleston and the Upstate. "Mommy, I don't want to watch tv and I don't know what to do." Apparently the DVD player had lost his attention. I talked to him for a while and tried to console him only to be interrupted by a call from the hospital.
Brinkley's nurse was calling to let us know that they had to change the plan. Rather than remove the line, they had to replace the chest tube that had come out over the weekend and leave the line in place. His lungs had to be drained again before they could attempt to remove the line.
That night he started running a fever and his white blood cell count was highly elevated. Trying to cough up the junk in his lungs was extremely painful since his breast bone is still healing from the surgery. He was miserable and nothing we did seemed to console him.
All I wanted to do was snuggle him and let him know that it would be better soon. I managed to maneuver myself to get my arm under his neck as if I was holding him and get half way up on the bed to be close to him. I am sure this looked quite awkward, but you gotta do what you gotta do. When he got quiet for a moment we rushed out before he could get stirred up again.
Yesterday he was able to get the RA line removed and while they were working they restitched one of his chest tubes. So then we were waiting on the ART line to be removed from his groin so that we could hold him. The nurse told us that they planned to pull it that evening before the shift changed. Five pm rolled around and she went to get permission to pull it. The Fellow on call told her to hold off because they wanted to use this line for some lab work during the night shift.
We came back after dinner and the shift change and Dr McHugh, the Fellow, apologized for teasing us so much and explained the plan. She assured us that it would come out the next day and we should be ready to move when a bed came available upstairs. She also talked to us about his fever and how they were following that. She was so positive and told us how wonderfully he had progressed the last few days. Brinkley was full of smiles and we enjoyed loving on him before we went to settle in to our new location for the remainder of our stay.
Gladly, we got off that roller coaster on a high after seeing this: