Gall Bladder Surgery

Well, through all my doubt and fear the great and dreadful day is over! He was in surgery for just over two hours, a lot longer than I was anticipating.  The surgery itself was successful and the biopsies were done as well.  We did discover by early afternoon that he is allergic to demoral!  That was not fun and created all sorts of problems.  So much so that he was transported to the hospital from the surgery center.  NOTE TO SELF....Day surgery is a joke!!! I will never opt for that again unless it's to get a wart removed! Whoever thought you could take out a body part then head home 6 hours later was smokin something!! I felt relieved when the decision was made to keep him in the hospital.  I sat there for 6 hours watching his heartrate drop into the high 30's mixed in with episodes of apnea.  His oxygen was really low as well, at times dipping into the 70's.  I had no idea how I would manage all this at home. 

So, I'm glad that the worst of the week is behind us.  I am even happier to report that his gall bladder really was diseased!  I know, it sounds crazy to say I am happy he had a problem.  It's just that the GI wasn't convinced and he gave some compelling reasons not to have it taken out.  Spencer's liver enzymes were normal and he didn't present like a typical patient with gall bladder problems.  In the end, it came down to what I felt was best.  It was a tough position to be in.  If we took out the gall bladder and discovered that it was fine, then we just created some possible problems for him and his already messed up GI system.  If we waited like the GI doc wanted, and it really was a bad gall bladder then we are compounding his problems and creating new ones.  Spencer will have some hurdles to cross over the next few weeks as we wait and see how his body will compensate without a gall bladder.  For most people, they have to eat a diet low in fat.  For Spencer and his poorly functioning pancreas, he needs to be on a high fat diet.  He has a hard time gaining weight because of his pancreatic malabsorption problems.  So, now what do we do?  As of Tuesday before surgery, he had lost 8 pounds.  I'm sure he will lose much more before he recovers fully.  Again, I am in the unappealing position of having to decide how to feed this kid as far as fat goes.  I have consulted a couple of docs and a dietician but no one seems to be able to know how to handle this.  The SDS community is saying stick to high fat....hopefully those mother instincts will kick in soon and I will 'know' what the right thing is. 

Today, he tried his first solid food since last week, a piece of toast.  He did fine with it and was really confused when he didn't feel sick while eating it.  He stopped in the middle of his feast.  I said, "What's wrong, are you sick, are you full, are you done?" 
"No, I'm just noticing that I don't feel sick.  The first time all year I think I can finish this."
I am so glad for him!  He is still struggling with pain.  Bleeding was a real issue for him after surgery.  Of course the only time we needed his platelets to be up in the normal range and they were the lowest they have ever been for him!  They weren't crazy low like Shelbie can get but did create some difficulties.  Dr. H commented that he bled a lot more than any other patient he has had. 

That's all to report on for this event!  I am very grateful to all those who prayed and offered support to us during this crazy week.   Prayers do make a difference.  I think I had mentioned in an earlier post that I was dreading this week of surgery but I actually wasn't nervous at all while he was in surgery.  I felt oddly calm, calmer than I have in over a month so I know I was being taken care of and blessed.


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