I think I am missing a post, but I may have just got lost in a fog of other emails and messages. 

To fill in some details, let me say that Mikie has been recovering as well or better than expected.  The last part is easy to say because Dr. Fann did not really expect him to survive the surgery.  He was smiling when he did though.  He said that before he was finished with the surgery Mikie's stats had come back to a normal range, with his heart rate dropping down in the 80's and 90's, blood pressure back up as it is supposed to be, and his temp even fell back down.

By now, late Saturday night, he is really doing well except his heart rate is a little high and he is hurting.  I'll post some more pictures soon, since I have finally figured out how to do it.  Lorraine actually did the work to get this last one posted.  I got this great little cell phone with a megapixel camera but I am really frosted that Verizon wants to charge me 25 cents each to send them to a website so that I can copy them to my computer or elsewhere.  Seems that Verizon even made the phone so you can't access the media center even with a cable.  That's ok, I found a hack out there that should get me into it.  What a rip off, they sell you the phone as a camera and then make you pay to use it. 

Back to Mikie. He no longer has a J-tube, he now has a real G-tube that goes into his stomach instead of his intestine.  They won't put anything though it for a week they say. Not sure if I mentioned it but they took out about 6" of small intestine.  The perferation was around the old feeding tube site.  We were concerned that maybe we did something while trying to get his feeding tube back in.  I'm even concerned that has I not begged to go back to his very short J tube instead of the long one they placed back in November or December when we had all the trouble with high heart rates and temps, when we looked for the source of the irratation in his bowel.  It turned out it wasn't his J tube, but I felt better knowing we looked.  (We found out after we came home that it looked like Depakote was the culprit as he was getting almost 3 times the normal dose.)  We wonder if his feeding machine might have been over pumping or something.  The doc says it is just hard to say if it had anything at all to do with what we have done in the past.  We do know that it will be nice to be able to feed him in his stomach now.  That means bolus feeds with no machine, 3 or 4 meals a day. 

It's going to take a while for all this to heal, and hopefully the incisions in the intestine will not leak or bleed or whatever it is they do. Doc says it was infected as well, so there will certainly be a course of antibiotic treatments.  Since he is likely to be there a while we are thinking of going ahead and getting Lorraine her new hip in a week or so, especially if we can get it in the same hospital.  (Yup, she needs a new one, hers is shot.... and she needs it soon.)

A week ago I was telling Lorraine that we have to start taking better care of ourselves.  Mikie was doing so good that I thought it might be possible he could live up into his 80's.  So if we wanted to continue to care for him we were going to have to live into our 100's!  And then we almost lost him.

The hospital called earlier to tell us they took him of the vent, and that meant that since he was coded DNR, and though he was doing well they would need our permission if suddenly he got worse and had to go back on.  Before they did surgery we had to remove the DNR or they would not operate, that's just the way it is.  The doc told us that if Mikie's heart stopped on the table he would not code him (revive) but it was a technicality that had to be done for him to even operate.  This is all a bit strange and I don't fully understand it, but our thinking is that since Mikie has come so far and is doing so well, we wouldn't want to do anything that would keep him from restarting Mikie's heart just because he had a seizure or maybe he burped or something like that.  (I'm stretching it to make a point.)  So we put him back on full code for now and agreed we would take it a day at a time.  When we first came in I asked them not to even put in central lines or intubate him.  But that changed, as I think I mentioned before. 

I know that as some of you read this you might think that Mike and Lorraine just can't let go.  You may be right, but I think that God will make it clear to us when that time really comes.  Each time we have done this Mikie comes back stronger than before.  In some areas he has lost some of his health, like the quality of his veins and he has a few blood clots now.  At any time one of those clots could move and Mikie will be gone.  If his shunt fails again, and it will, we are told he probably just can't get another. (I suppose that means he most certainly will not live another 5-8 years.)  Mikie's brain damage does not seem to be progressing.  Just a week ago he did something I haven't seen him do in at least a year.  He helped me dress him, and if you could see a picture of his brain you would realize what an accomplishment that is.  I'll tell you more about that later.  When we get to heaven, Mikie will be able to say to us, "You never gave up on me."  When it is clear that it is time to let him go, we'll do it.  And when it comes down to it, when God wants to bring him home there won't be a thing we can do about it.

I'm off to bed.