Home Again

Owen has completed his second and hopefully final stay in the hospital.  I drove him down on Monday, December 19, 2011 and had him admitted to the PICU at noon.   The goal was to capture one of his seizure-like episodes on an EEG to confirm they are actually seizures.  About an hour after our arrival, the EEG technician arrived to place the sensors on his head.  This time they were adhered using glue and the process was a bit more time consuming.  Owen was pretty unhappy with the process at first, but once he had his pacifier, he was able to settle down.

Here is the thing about Owen, he is a people-pleaser.  And by people, I mean doctors. My little boy, the same one who screamed all morning long and had one of his seizure-like episodes twenty minutes before we left for the hospital, was an angel on Monday afternoon.  He sat contentedly in his crib sucking on his pacifier not making a peep.  I actually sat in a chair and leafed through the latest US Weekly.   A little later in the afternoon an a cappella group came and sang Christmas carols for the patients on the floor.  In general, it was a fairly enjoyable afternoon. Then the doctors went home for the night.

Well-behaved Owen returned to regular Owen and the screaming and irritability ebbed and flowed for the rest of the evening and overnight.  In the 48 hours Owen was hooked up to the EEG machine, he did not have any of his seizure-like episodes.  During rounds and visits with his specialists, he sat in my arms like a happy little baby without a care in the world.  Owen behaved in a similar fashion when he was admitted to the hospital back in November.  Yes, the overall goal is for Owen to be comfortable and peaceful, but he could demonstrate a little bit of his drama for the doctors.  There is no need to save it all for the privacy of our home.

Did we accomplish our goal of recording one of these episodes?  No.  Owen was taken off most of his medications in hopes of eliciting an episode, but it never happened.  When I arrived back at the hospital Tuesday night after working all day, I saw the Owen I knew in September.  He was inconsolable, fit-full, and a very unhappy baby boy.  This was the Owen I never wanted to see again because I knew his behavior was troubling for him.  Comfort and quality of life;  those are the goals.  My heart ached all of Tuesday night into Wednesday because Pete and I had knowingly made the decision to return him to this state.  And for what? We had captured an episode on video and all of his doctors agreed that it looked like a seizure.  If the bottom line is that Owen is never going to gain skills- physically or developmentally- then why were we putting him through yet another test?

I had a mini-breakdown during the Wednesday morning rounds.  Probably not appropriate, but after four months of sleep deprivation I felt we had reached a crossroad with his doctors and my mind was not thinking in terms of appropriateness.  Besides, I was on the PICU floor- there is no way I am the first mom to cry during rounds.

Owen's care needs to be switched to comfort care.  This is not a new conversation, in fact it is one we have had with his doctors many times.  The sensors were removed, a DNR has been issued, and we are home again as a family.  Owen's life is now strictly going to be about comfort and Pete and I finally feel like we are taking a step in the right direction for him.  It is painful to make a decision like this about your child and I can't help but cry even as I type the words.  Owen may be with us for only a short time, or we might still have many years. Either scenario is fine as long as I know he is at peace and his troubled brain is no longer distressing him.

On a bright note, Owen and Pete got to meet a few Bruins players who stopped by the PICU for a visit on Tuesday afternoon.  Here is the picture: