What a day!  We thought Mikie might be having surgery today, but it just didn’t happen.  From what the docs tell us it really looks like the source of the infection lies in the abdomen.  We are finding out some strange things.  Dr. Smith is pretty adamant that all the hardware needs to come out. Dr. Dial is concerned that we might open a door we can’t close.  Dr. Smith says that at any time in the process we can say the word and they will move to ‘comfort care’, and I suppose you know what that means.  We are told that the docs will do what we want, but sometimes in making sure we get all the possible outcomes they tend to cause us to question what we want to do. At one point today we wanted to ask the general surgeon if he could reinsert the shunt drain back in his abdomen and let us come home.  Dr. Dial says he can close it off, but then there would be zero chance of recovery.  I think that it has been functioning so well the last few days draining outside the body that it is possible they could put it back in and continue the antibiotics and Mikie just might have a chance.  We think though that what we hear them saying is that they want to do it all or none.  And we have to agree that option gives Mikie the best chance, which means to also remove the shunt in the head.  The respiratory-cardio-pulmonary doc has painted a very bleak picture of Mikie forever on some type of breathing machine, even at home, and probably with a tracheotomy.  We think he doesn’t know Mikie like we do.  First reason, he said he remembered when Mikie was in the hospital a month ago.  He said he even spoke with him before he went home.  Sorry, but anyone that has known Mikie for more than 5 minutes knows that was not possible.  Second reason, we went through this two years ago.  We know what God did and that we got back a Mikie that was healthier than he had been in years. We are of the mind now that if they find the source of the infection was in the abdomen from old hardware, and that if they put in a new shunt that works, we will have that Mikie back again, and there won’t be any respiratory problems.

Mikie has improved remarkably in the last two days.  His heart rate gets down in the 90’s at times, but goes back up when they agitate him, particularly with the BiPAP machine.  We think he is fighting to live and want to give him every chance to do so.  If God wants to take him home tomorrow, then God can do that.  But He has chosen to allow us to see Mikie fight to get better, and we’re taking that as a sign.  Doc Dial was supposed to speak to us last night about our options and had he done so we probably would be looking at it through his very clinical eyes, but providentially it was Dr. Smith that was there at the same time we were and though the discussion was frank and honest, we saw a man with compassion.  He chose his words very carefully and even appeared to choke once.  He offered no false hope, but did offer possibilities. 

Just a side note, I notice that I am getting more forceful when Mikie doesn’t get the care I think he can have.  Today we asked if we could take him off the BiPAP long enough to shave him, and that by doing so we could see how he does on his own.  The nurse offered to do it but we insisted and she let us.  It was wonderful to be able to care for him in this simple way.  We were able to see that Mikie was able to breath off the machine, which also set the way clear for him to go to get his CT scan without fear of respiratory failure while away from the machine. The daytime nurse this week, Cindy, is wonderful.  She cares AND she is highly skilled and very knowledgeable.  We have seen that Richland Memorial has a wonderful staff.  But this evening when we came in and Mikie was very stressed out and would not calm down I felt it was time to not rely on them to find out what was bothering him.  I noticed he was trying to cough, but had it seemed to me that the positive pressure of the BiPAP machine would simply not let him do it.  I told Betty, the evening nurse, that I wanted her to ask the respiratory therapist to allow us to take the mask off for a few minutes.  Sure enough, he was able to cough and I was able to use the suction to get the stuff out.  I write this to remind myself and others that faced with depending on others to take care of your loved one, then sometimes you have to stand up and let people know that you might know more about the situation than they do.  I’m not trained to use or understand a BiPAP machine but I learned enough about that acronym to know that PAP stands for Positive Air Pressure, and common sense tells me if you force air in my mouth (so much that my cheeks expand) then coughing is not going to be easy. The point is, I’m recognizing that just because I’m not a doctor or nurse doesn’t mean I don’t have a brain and can’t think through some of this stuff.  I think Betty agreed with me once she saw Mikie calm down and we could both hear with the machine off that he had some crud he had to get rid of before he could be comfortable.  She had to do the ol’ tube up the nose thing to help him get it out.  I told her I wanted to learn how to do that and she gave me some instruction.  But I want to learn on myself.  I asked another nurse this weekend if he had ever had it done to him and the response was no, they practiced on patients, not each other.  I think in med school it should be required that potential care givers experience what it is like on the receiving end.

Enough for now, 5 AM comes early.