Monday, May 21, 2012

Nothing to do, but cry in the background

Friday was Samuel's Procainamide challenge test.  I have been super nervous about this, because I didn't want him to have Brugata syndrome.  It would definitely change his life, as well as ours.  Sam is a great athlete and loves to do anything athletic.  Having Brugata syndrome would have forced him to stay away from anything competitive.  It would also cause him to have some very invasive procedures done, since a pacemaker is the treatment for Brugata.  Also, I was worried about the potential side effects of the Procainamide.  I was determined that they would let me into the cath lab to view the whole procedure, because I thought there would be nothing worse then me waiting nervously in the room and then having them come in to tell me that something went wrong.  When we got there, it's the first thing I brought up and they agreed to let me go in, if I was in scrubs with my hair covered.  Check, not a problem.
Sam got all hooked up and then they came in to do the IV.  I could tell it was a brand new nurse.  She had an assistant with her, which is not unusual in a children's hospital, but then when she found a vein, she checked that it was a good sight with the other nurse.  I decided to let her do it, because we all have to practice- it's the only way we get good at IV's and Sam has good veins and I knew would be a good first patient for her.  She fished around for awhile while the other nurse talked with Samuel.  Sam was doing fairly well, I thought.  He sounded completely normal the whole time as he talked with the other nurse.  Finally, newbie nurse took out the IV and stated that she couldn't get it.  Boss'n nurse took over.  At this point I looked down, or over at the doctor- I don't know which, but I quickly heard the sounds of something going wrong.  I looked up and Sam was stiff, eyes rolled back in his head.  I yelled, "what did you do to him?" and then the doctor took over.  It was no ER scenario and I had to keep fighting to keep my mouth shut and my hands to myself.  In the end I had to back myself in a corner.  I knew that if I started trying to help, that they would spend valuable time trying to get me off, instead of taking care of Sam.  So I stood in my corner and cried as they took 3 requests from the doctor to finally get some oxygen on him, 2 requests before they called the code.  Then everyone and their dog flooded into our room.  Unfortunately, this seemed to cause more confusion about who was doing what!  They were getting the drugs out, trying to find a pulse, trying to find any vital signs at all.  It was only 30 seconds to a minute before they announced that he was breathing again on his own and waking up, but it was the worst 30 seconds to a minute ever!  In the end his heart had stopped for  22-23 seconds.  After reviewing everything they said that it had nothing to do with his Brugata syndrome and it wasn't a seizure, even though it looked very similar.  He wasn't shaking, just stiff and his hands and arms came straight up like they were fighting against a huge force of gravity.  He had no post-ictal stage, though- he wasn't extremely tired, he was alert as soon as he woke up and not confused, he never wet himself or anything like that.  They said it was just from lack of oxygen to the brain.  At this point they decided to go ahead with the test.  This made me extremely nervous.  I asked them nicely that the best person available put in the IV and then followed them into the cath lab where the doctor put in the IV.  The test went smoothly and was inconclusive.  Even though it looks very much like Brugata syndrome, they can not call it that.  At this point, we just have to redo his EKG every year or so and possibly get genetic testing.
Cincinnati children's hospital is a teaching hospital, so they had lots of doctor's there to review the case.  One of them is doing a syncope study (fainting).  He said that frequently when people faint, their heart will stop, but we just don't know it, because they aren't hooked up to any monitors.  He said he has one guy whose heart stops for up to 60 seconds before restarting on it's own.  They believe that what caused the fainting was stimulation of the vagus nerve which causes your blood pressure to drop.  Sam's blood pressure was 42/nothing.  This must have been caused by the fishing around for the vein, although they weren't doing anything at the time he did go out.  This happened when he was knocked out in football, too.  We say "knocked out", because it sounds better, but he was totally awake and alert after it happened, he passed out about 10-20 seconds, afterwards.  He must just have a delayed reaction to pain.
Rob has found me 3 times in our marriage after I have passed out.  He said, at least one of those time, that I looked like I was seizing.  That is the one I don't remember, at all.  I suppose whatever fainting problem I have, Sam inherited.  Lucky guy!  I know I am going to be a lot more nervous when he plays sports.  Knowing he has an irregular EKG and knowing that his heart likes to stop when he faints are two things that will worry me.  Everyone asks me if they shocked him- no you don't shock a heart that isn't beating.  But I think I am still going to insist that they have an AED available at all competitive events!
Sam told me when he woke up, "I wish I was in school."  I could only pat his hair and say, "I know buddy."  When the test was done, he got to watch a movie and eat a big breakfast of omelet, and hash browns and donuts and then he said, "now, I don't wish I was in school."  I am so glad everything is Ok with our little buddy!


Searls Stuff said...

Wow! Dealing with the unknown is always so much more difficult than knowing what the problem is and working on solving it. We will keep your sweet family in our prayers.

Anonymous said...

I am now very glad I was so stupid when you were fainting or I would have been more upset. I will share are the details of your passing out-being knocked out, if it will help. bless sweet Sam. He is a treasure.