Tuesday, September 14, 2010
Tuesday, September 14, 2010
Today, Caleb got his PICC line. A PICC line is a peripherally inserted central catheter. Basically, it is a line that runs under his skin in his leg for about 1.5 inches, enters the large vein in his leg and goes almost to his heart. When they came to get me to sign the consent form, they went over all of the possible risks - the worst of course is death. They do approximately 750 of these each year, with very few problems. When they did his two open heart surgeries, we never went over any of the risks. The most life threatening surgery consent was no big deal and the routine procedure required ten minutes of discussion. I thought the irony was great!
The PICC line insertion went well. Caleb did not require intubation and had no weird heart issues. They gave him the normal sedation, and he was still agitated. They then gave him something they described "like PCP". That seemed to work and Caleb was basically stoned the rest of the afternoon. He slept until 5:00 pm, but he was very calm and comfortable!
They are making small changes to move Caleb to an oral diuretic. One more step toward home medication. Woo hoo! There were no other major changes today because they wanted him to settle in from his PICC line insertion.
I had a nice chat with the Nurse Practioner. When she saw me in the hallway, she grabbed my arm and said "He looks great today!" She is very animated, caring and takes all the time you need to answer questions. I asked if she thought Caleb was progressing well enough that he will survive to go home. She said that she was pretty sure of it now. You never know for sure around here. They deal with so many really sick kids that not many other hospitals would touch.
I had been wondering how sick he really was after his first surgery. As I had expected, she said they were very worried during the first 48 hours and it was a big risk putting him on bypass again for the second surgery. The stuff we are dealing with now is nothing compared to what Caleb has already fought through.
I also asked her at what point the major mortality is involved in the series of surgeries. She said that if you can make it through the first surgery and the first winter, you have cleared the major hurdle. The second and third surgeries are easier on the babies and they are much stronger.
Now the tricky part is finding the right balance of protecting Caleb from colds and flu and keeping a "normal" family life. The Nurse Practioner said that we would need to wash hands obsessively, but that we still had to live life with three siblings in school. She said to "use your heads and realize that the rest is in God's hands". You can see why a person could get very comfortable with the medical care and advice you get here!
Today, Caleb is four weeks old. We have been here long enough that I had to trim his fingernails. Hopefully, he won't need his first haircut before we leave!