Well little one, you have managed to do it yet again...just when everyone thinks we know what the game plan is, and gets cautiously optimistic about it, you change it!
Your TPN and lipids arrived last night about 10pm and were hung. They were connected to your central line. We got you all changed and ready for bed, you ate one last bottle (3oz) and to sleep you went. Then you began passing a lot of gas, and it spooked us that maybe it was coming out your incision and not your stoma. We managed to verify that it was coming from the stoma, which is right where it should be coming from. Finally, we decided to try and get some sleep.
About 2:30am, your nurse came in and we made a note to ourselves to never let the nurse empty your ostomy bag. ESPEciALLY not at 2:30am. One diaper change, one bandage change, one outfit change, one bed linen change later, back to sleep we all go. Only to wake up around 5am to you fussing. One diaper change, one bandage change and one 3oz bottle later, you get settled back in for sleep, and then we notice that your armpit of your outfit by your central line is soaking wet. It was leaking.
We begin checking the connections in your line to see if maybe one was just loose, but they all felt ok. Then we could see that the dressing over your line and underneath the dressing itself was wet. We call for the nurse. This means a dressing change at the very least. That is kind of brutal on you because the tape that is over the dressing is so tough on your skin when it comes off. You scream through that. She then connects a syringe of saline to one of the lumens of your line to flush it. It pours out of your skin where the line inserts. Ugh. We know this means that your line is no longer usable. What we don't know is the "what now".
Surgery comes by 3 times pondering what to do with you. One of your surgeons is so frustrated with this latest development that he kind of storms out for a moment. We feel his pain. He comes back and is just exasperated and said that we are too nice. That is why all the bad keeps happening, because we are a nice family. So, they all debate amongst themselves. Both attending surgeons are brought into the discussion.
The decision is this:
They came up just a few minutes ago and took out your central line. They chose NOT to take you to the OR to put in another central line. They are trusting you to eat well. Without a line, you have no way to get even basic IV fluids for hydration. They are also trusting your small intestines to begin working like they should and start absorbing the nutrients you need. Without a line, you can't receive TPN and lipids for additional nutrition. They are trusting you to take your antibiotics by mouth. You were recieving them through your line. They are giving you gut-specific antibiotics to fight against infection in your belly. They are trusting that belly of yours to rid itself of all the yuckiness inside it, and get better.
They are amazed at how well you look. They are amazed by how perky you act. You have begun smiling and laughing at them and flirting with the women, etc. Their words...."he's a very strong boy. We are so thankful that he's a very strong boy".
So am I Riley Bear. So am I. We are putting a lot of trust in you being so strong. Please keep up the fight!