Tuesday, November 20, 2012
Two steps forward, three steps back
Tonight I'm sitting here writing from the ICU. John's incision started to look kinda bad about 3 days ago. Then 2 days ago I was pretty concerned for it. I kept insisting to the nurse that it just did NOT look right- red, angry, puffy, exuding something that looked like pus... She decided to call the Dr- they wanted to try to get a culture of what was leaking. First attempt was unacceptable, then they took blood, then a second nurse was able to get a culture. The culture was negative and his WBC was elevated, but nothing too crazy. They also did a CT where they could see some pockets of fluid but werent sure if it was infection or what. He was started on antibiotics. Yesterday they prepared us that today he may need to go into surgery to drain the incision site if it was infected. Today I went to see the oncologist who visited J, and John was doing his OT/PT. I thought perhaps the antibiotics were working already and surgery would become a non issue. Boy was I wrong. Suddenly I get a call @ about 10:30 that John would be in surgery within a few hours. They were going to open the wound, clean it out, and put in some sort of wound vac. This would possibly necessate a 2nd surgery and it would likely need to heal from the inside out, and this could take 2-4 weeks. This immediately made me start crying because I had hoped so badly that John would come home for Christmas. He was pulled off the rehab floor (we wented to save as many rehab days as possible!) and went to day surgery. They took FOREVER to take him back and I was SO happy when they came into give him the cocktail of Versed and whatever other amazing drugs they give you before a surgery. My mother in law was with me, so we chatted and I did some work on the computer to pass the hour the surgery was supposed to take. They finally called us to say he was out of surgery but instead of being moved to a 4th floor recovery room, he would be in ICU and would have a drain, not the wound vac, and the Dr would be out to talk to us. That was it. I was in absolute AGONY waiting the 4o minutes it took the DR to come out and speak to us. I was not quite prepared for what I was going to hear- John has been leaking CSF (Cerebralspinal fluid) since his neck surgery and the areas of fluid they saw were pockets of the fluid. The pressure from these had made his incision area "mushy" and all kinds of yummy things like that. The fluid was clear, but they are culturing it anyway. He never complained of a headache, so the Dr said we were pretty lucky that he didnt develop meningitis after this has been building up under his incision for quite a few days. He said because of the "mushy" skin around it, we may still be looking at having to do additional things to the area and even have to let it heal from the inside out instead of reclosing it (the skin is still very taunt and wants to "open" despite sutures and staples) but its wait and see. So now he is here in the ICU for a couple of days, back with his BFF the morphine pump, with a drain coming out of his neck, hooked up to a million machines. This morning he had walked 9/10's of a mile in PT. :/ This will be weeks of healing (he'll go to acute care after ICU)and of course the probability he wont be home for Christmas...we'll get to the tumor board from LSU Shreveport and the oncologist here @ our current hospital's recommendations for treatment of his remaining tumor in another post. Still waiting on recommendations from St. Jude's and MD Anderson even though I think we know what we're doing at this point...we just cant go taking out a tumor from John while he has all of this infection, leaking spinal fluid business doing on. I'm quickly learning you can NEVER take for granted that what you THINK will happen is how things will happen. For now I'm just happy that he is asleep, resting somewhat comfortably, and that I can stay with him tonight. I'm hoping to work from the hospital tomorrow, then get through the holidays (somehow...) and go back to work on Monday when John should be in acute care.