Another incredible day.  I visited Mikie at 5:30AM as usual for 45 minutes and headed to work early.  He was a bit agitated, but not real bad.  He had calmed down some from the night before.  I found out later that the reason he was having so much trouble breathing is because he was ‘wet’, meaning too much fluid in his body.  His sodium level was up the day before so they changed his fluids to change that and in the process he was over-hydrated and it was causing excess fluid in his longs.  When I got through work and met Lorraine up there around 1:30 PM he was quite agitated, though they had him off the BiPAP machine,  He looked like he wanted to sleep but every time he started to relax he would slow his breathing so much that it forced him to suddenly gasp for a breath and bring him back to a near panic state.  Poor guy, and it broke my heart. 

Darn, I’m hitting you with some bad stuff and I wanted to start off telling you the good news, so let me do that.  At the 8:30 PM visit we were about 10-15 minutes late getting there and security makes you sign in after 8:30 PM.  We had to stand in line for 10 minutes and even wondered if we were going to get in to see him since visitation was over at 9 PM.  When we got to the room we looked in the room and he was sound asleep, heart rate down to nearly 100, blood pressure down in the normal range, and his breathing was relaxed and steady.  He looked as peaceful as we have ever seen him.  It was clearly answered prayer.  We didn’t even touch him, we just soaked it the sight to strengthen our own bodies, we just stood and praised God with tears of joy.  What a way to end the day.

Now let me tell you why this was such good news.  At the 5 PM visit, one of the surgeons, Dr. Fann, was there waiting to talk to us about the surgery in his abdomen.  He had the CT scan pictures on the computer nearby.  He said If the surgery is done it will certainly be long and complicated.  There is almost certainly and encapsulated cyst there where the shunt tube was draining into the abdomen.  Basically that would be a ball of infected fluid.  To get the old tubing out of his belly they would have to likely have to move through scar tissue.  Compare it to trying to take apart layers of tissue super glued together.  There are many dangers and likely complications.  He was frank and honest about the endless possibilities.  We were reminded that 10 years ago (approximately) when Dr. Reddy put in Mikie’s feeding tube he ran into problems.  We remember the discussion with Dr. Reddy afterwards.  Mikie’s organs are not arranged like yours or mine.  It was impossible to put a tube in his stomach but instead it had to go into the small intestine.  The stomach was just out of reach.  In case you wonder, much of this is caused by severe scoliosis that was likely caused by radiation treatment that Mikie had after he had a cancerous kidney removed when he was a little more than a year old.

Let me stop here and say something that I think you should pass on to anyone you know that is faced with raising a special needs child, or I suppose even a normal child.  Keep a journal!  Gosh I wish I could go back and find the details to all those operations!

Back to Dr. Fann’s comments.  He wondered if we could proceed without removing the hardware (tubing) from the belly area.  It looks like we just need to get all the docs in one room.  I conveyed to him Dr. Smith’s firm belief that everything had to come out, meaning in the belly and the head.  I am now in agreement with that, all or none.  To put a new device in the head and maybe clear up the infection only means we will be back in a year or two with another infection, if the cyst is not removed from the belly. To hope that the infection clears up leaving infected hardware in is only a false hope. There can not be a partial attempt to clear this up.  And here comes the tough part.  We either aggressively go for the cure or go in to ‘comfort care’, meaning hospice, make him comfortable while he dies.  I can type that sentence but I don’t have the strength or composure to say it out loud without choking.  I told Dr. Fann that I thought Mikie was in better health today than he was when we went through the ordeal two years ago and I pointed to the outcome posted on the wall, the many pictures I have shared with you before.  He smiled, and reaffirmed that what he was hearing me say was we want to see him well.  So he will meet with other doctors and get everyone on the same page.

Well, that’s not the end of the today’s story.  Now we are not so sure.  While I was making the claim that Mikie was in better shape today than two years ago, we could see that Mikie was obviously stressed out from a not very good day.  His systolic blood pressure was over 150, and had been higher than 160.  Diastolic was 100+. His pulse was 140 and up, sometimes down to in the 130’s.  While that is not deadly, it had been like that all day long. He just could not relax.  We wondered if we were torturing him.  I had said he was improving each day.  The last two days might not have been a giant step back, but I sure couldn’t claim he was getting better.  I was dying for an encouraging sign, I just wanted to see him peaceful for a while.

Now you know why we were so elated to see him so calm at the last visit of the day.  Now we wait and see what the next few days bring.  We’ve got to be convinced that he can pull through this thing, or else make some hard choices.  While Mikie was sleeping this evening and after were able to enjoy it for about 10-15 minutes, nurse Betty came in the room.  She was enjoying the peacefulness as well.  We began to talk about caring for Mikie and I told her how he had stayed so much the same over the years, and we talked about Mikie’s graduation from school (ok, so they kicked him out because he turned 21) and how by that time there was only 1 other student in his class, and how that child had died several years later.  We enjoyed talking about the things that he could do, like throw his toys and play catch and how he laughed and loved music. Somehow we discovered that she used to work in hospice.  We calmly talked about what that meant and what kinds of things happen.  (I say calmly but I was clearly choking as I thought we might need this kind of help in the near future.)

In the last few days we have seen events happen in ways that were sometimes difficult but overall the timing was beneficial.  Coincidences?  Craig Wilkes said in his sermon about the book of Esther this past Sunday evening that “a coincidence is a miracle in which God chooses to remain silent.”  We’ve seen a lot of providence going on the past few days.  Where’s it going?  We don’t know yet.

I really appreciate the comments from everyone, and I know that everyone has done the right thing by listening and not offering their own suggestions or deep feelings about what one should do in situations like these, but I want you to know I welcome hearing about your own experiences in dealing with the illness and loss of a loved one.

Thanks again for praying.