The Ups and Downs of it

So, in my life there have been many times that I could have described myself as exhausted. I now know just how wrong I have been. Thinking back, I know that I was tired during my time at Ft Knox, I am pretty sure there were other times in college. I know that I had my days working in the restaurant, doing the close, open. I am sure that I was tired in my days working night security, and in the factories on the night shift. None of that comes even close to having one newborn at home and the other in the NICU. While I know how I am feeling I can't even begin to image what this has been like for Joseph. I know that in all reality he will never remember what he is going through, but I know how I feel now and how I have felt after surgery and I know that it can't be easy. Including the two he had today, more later, he has had SIX surgeries since Friday the 15th, and that doesn't include being born cuz that was Christa's surgery. He is a tough little guy, but as we have been told and until now it didn't really sink in, this is not just an uphill climb, it is a series of BIG ups and downs. Yesterday you may remember seemed like a turning point, a really big up. That all changed very rapidly this morning at the bright shiny hour of 3:30 am.



I received a call from the resident assigned to Joseph overnight that the bowel in the "silo" was not looking good and that Dr. Statter was on her way to evaluate the situation. Ten minutes later I was giving her a phone authorization to do a surgery on Joseph. The resulting surgery removed 2 cm of bowel that had "died" from inside the "silo." Since I had left him earlier in the evening his saturation levels had gone down and while all the parts inside were getting oxygen, none of the stuff outside was getting enough. We came back in at around 10:00 am this morning and he was looking OK, though his "sats" were still kind of low, they had also returned to the previous day vent levels and put him back on the dopamine which they had been weening him off of (yes I know it is spelled wean, but I like my way better, ween ween ween ween). We were also told that Dr Statter would be coming in later in the day to remove the cannulas from his neck. No sooner were we told that then the OR team came in to start prepping the area for surgery. Then here comes the Dr, who tells us that she may need to remove more bowel as it is still not looking the way she wants it.



After about an hour and a half she came out to talk to us, she removed the cannulas and that went well, she also removed an additional 30 cm of bowel. This makes for a total of 12.5" lost today, and two additional surgeries. I tell ya, this little guy has been through the wringer and he is still fighting. It took about another hour or so but he is back to being stable. On a scale of one to ten today was about a 4.5, yesterday was an 8 and Tuesday was a 1.5. Joseph is really fighting but the odds seemed stacked against him. We haven't even begun to deal with the heart defect, the doctor today seemed to feel that we shouldn't make any changes for right now, just let him be stable and recover from the last couple of days, I tend to agree with him.



On a brighter note Emily gets cuter everyday. She is working very hard on holding up her head, and wrapping me even tighter around her little finger. Here are some photos to give you all a cute fix, to keep ya comin' back.



Steve

Look! Its my nose!

LALALALALA, I can't hear you!