I haven’t posted for a while, my life has been a  new level of crazy.  April 3 my son Robby was admitted to a hospital where he stayed for 31 days.  He had some horrible things happen to him there and the only way I was able to get him out of there was to put him on hospice long enough to get home.  This lead to another hospitalization (different hospital) so we could get him on a feeding plan.  We thought that had worked but the day after he came home we had to stop that feeding plan.

We saw one of his doctors and the only option was TPN which is iv nutrition.  And so the battle began-for three weeks I fought and fought, I faxed documents and I had endless conversations with his doctor who also fought and fought, faxed documents and was just as frustrated as I was.  But the infusion pharmacy would say we just weren’t quite there.  In the mean time Robby was getting weaker and losing more weight, but he was hanging in there.  The last hurdle was down to one blood test-albumin.  Robby’s albumin was 3.6 and it had to be 3.4 or less….seriously.

At the three week mark things took a horrible turn, we couldn’t get him awake and we couldn’t get a blood pressure reading.  We called 911 and they couldn’t get a reading either, I told them about his lack of nutrition so they checked his blood sugar which was less than 20.  They took him to the second hospital because all of his doctors are there.  He was in a coma, he had severe septic shock, pneumonia, was severely malnourished and his lab values were a mess.  They tried more than once to start nutrition but every time he got refeeding syndrome which caused his lab values to get even worse.  They ran so many tests but answers were in short supply.  The ICU attending doctor told me they felt he was not waking up because they believe his blood sugar had been that low for a period of time which caused brain damage and you don’t come back from that.  We also learned that some of the meds he takes create a false high reading for albumin-you would think a pharmacist might know that.

So the day I was dreading was here-decision day.  Robby’s doctor that fought with me for the TPN had been there to support me at the hospital, but this time not as his doctor but, as he put it, as family.  He came and we made the decision together that the best thing for Robby was to let him go.  My heart broke.  This was the hardest thing I have ever done.  So at 2:28AM on June 11th Robby passed surrounded by some of the people who loved him and is now missed by so many.