November 29th, 2013. I Kind of Want to Punch Today in the Face

Today was tough. It was one of those days where we woke up already knowing the new challenges we would be confronted with, we just weren't sure how serious they would be. 

Let's start with young Henry. When we got to the hospital he looked pale and like he was hurting. This wasn't a huge surprise because, as we were told last night night, his infection cultures had come back positive and the kiddo is fighting some pretty wicked bacterias. The Infectious Disease doctor came in to meet with us and told us that Henry's PICC line had to come out. To make up for having his PICC removed he had to have two additional IV lines put in.  This is not easy on such a small baby and we are hoping they hold until it's safe to put in another PICC. They ordered an echo of his heart because there was a concern the infection had begun to colonize in and around his heart.  The echo came back clear of infection but showed that the hole in his valve has gotten bigger. The heart valve issue is just going to have to get in line because at this point we have bigger fish to fry on little Henry.  The plan is to keep him on antibiotics and keep culturing and hoping the infection clears up. I won't even go into what happens if it continues. We'll cross that bridge if we come to it.  Surgery came by to check on the drain that had been placed to see how it was draining and how Henry's tummy looked. The surgeons were happy with how everything looked and have begun slowly inching the drain out. This process will continue over a period of days as they watch how he reacts to it.  Henry rested pretty comfortably the rest of the day. He had a kick ass nurse today who was a total tiger when it came to his care. 

Charlie, Charlie, Charlie. On the plus side, he's now opened both eyes! On the other side this wee brave heart had a real bitch of a day. It started out well enough. He looked good and nobody was overly worried about his vitals, labs or presentation. The morning was all about Henry and Charlie was just resting and doing his thing. David and I went downstairs for lunch and came back to find Charlie in the middle of his assessment. The boys get assessed every 4 hours so it's totally normal to see this going on. An assessment is where the nurses change them, take temps, blood pressure, turn them, readjust tubes as needed. It's all totally part of the day. I was holding his hand and talking to him during part of the assessment and then went to sit down and just watched. I could see his nurse starting to get a worried kind of hurried way about her and, not unusually, his alarms were sounding. Their alarms sound all the time because of various reasons so, at this point, they don't worry us most of the time. This time was different.  Charlie's nurse was adjusting him and messing with his breathing tube and I could tell she wasn't happy with what she was seeing. She started texting on her phone for some backup right as the Respiratory Therapist came in and immediately got to work. This guy is usually very calm but this time he was moving with purpose around the room and then I saw it. He pulled the bag out and started bagging Charlie.  After two weeks in the NICU I knew what this meant, Charlie wasn't getting oxygen from his tube and they were having to breathe for him. At this point, the nurse calmly but quickly explained she was hitting a button on the wall to tell everyone to come into the room immediately because Charlie was in distress.  She pushed the button and within seconds people were breathlessly running into the room and the race to re-intubate him began. Oftentimes, little babies' tubes move or come out and they have to be re intubated and it has to be done fast. Charlie had 10 people working on him in various ways and those 10 amazing people got his tube back in and saved him. As a parent, this was horrific to watch. Nobody should have to see their child go through this. You want to run out of the room and hide in a place where this doesn't happen but that just isn't possible. Your job as a parent is to stay there and watch and be strong for your child. You don't get the luxury of falling apart. Once Charlie was stabilized, he was tucked back into his isolette and left alone.

The doctors were really pushing for us to have skin to skin time with Charlie. As much as I was dying to hold him I very much understood that, given the recent trauma of re-intubation, this probably wasn't the best day for it. The doctors disagreed and really encouraged we try skin on skin today. So, we did - and it was a disaster. I was set up in a chair and Charlie was carefully placed inside my shirt. The nurse started to notice after about 5 seconds that his color was fading, Charlie was turning blue and his heart rate was plummeting. No sooner had he been placed in my shirt than we had to stop because he wasn't breathing and was now turning blue. The nurses got him back into his isolette and, once again, stabilized him.  His heart rate returned to acceptable levels and his color returned as he began to take oxygen in again.  This was pretty traumatic for both David and me.

So, as I said, today was rough. We are hoping for a calm day tomorrow because all of us Texas Fitzties could sure use a calm day with a sprinkle of good news.  

(A)