Friday, April 5, 2013

Headed Down a Familiar Road?

This week has been nothing short of a nightmare. PJ had his PET scan on Tuesday which was a step that was needed to try and pin point where all his dysplasia is at. The scan itself took 30 minutes but for a child it is a full day of appointments.  We got in the hospital at 7:30 in the morning and waited around until he was called back to get hooked up the EEG.  PJ did so well hanging around the hospital...he was eating up all the one on one time he was getting from Mom and Dad!

Once he had the leads on we had to wait around for his IV hook up and his Injection of Sugar (slightly radioactive) fluid for a 45 minute "quiet time" to let the fluid get to his brain then wait for the team to come in for sedation.  Really most of the day was just a whole mess of waiting on different people. Very exhausting for all of us...expecially when their play room is for children three and up.  Big bummer for Pauly! 
On a happy note PJ did, however, perform greatly with the leads on and recording.  He had one of his hardest physical seizures to date and struggled to come out of it.  I was so glad it was recorded and I am hoping it leads the doctors to more answers! Once PJ got out from his PET scan at around 1:45 we watched him sleep off the meds for 40 minutes and then FINALLY let the boy eat some food...Poor thing was starved! He didn't stop shoving food in his little mouth till we got home around five.  By far the worst part of the scan is having to keep food and drink from your child...even more so when they absolutely have no idea why it is necessary.

So onto a quick update of Pauly overall.  Things are starting to really worry me with him here recently.  He is now starting to have these clusters of seizures very similar to how they started out last year before he started going into status and eventually was put into a coma to save him.  Actually I don't even think he stops seizing during these clusters but is seizing inside and not physically.  You can see in his eyes that he is not with us...not the look he gets postictal but the look of being waaayy off.  We ended up giving him a dose of versed on Wednesday during on of his clusters and went to the ER and were given the okay to leave after 45 min of being there only for him to have another seizure in the car. He began jerking hard in his sleep once we got home and at that point we drove to his hospital in Seattle where his specialists are which after checking him over and observing him allowed us to go home and wait for more.  I am petrified that we are headed down the same road we walked over a year ago.  Things are slowly getting worse and the intensity of his seizures are getting to be more and more.  We also found out that the PET itself didn't show anything but they said with these PET scans the EEG readings are the most important (?) and those results would be there next week on our appointment day with the epileptologist.  He is going on the board on Monday as well to see what the other doctors think should be done.



  1. Hi Marcia and Barnes Family,

    So sorry you are in this position. It sounds like PJ is having a rough time. I wish we were closer. We could certainly help you, or just be an understanding ear when needed. At SC, who is PJ's doctor, Saneto?

    Any insight as to why they have not suggested a MEG study?

    Thank you so much for the blog updates. You have a wonderful family. Be strong. You are doing the right things.

    -the liningers

  2. You have no idea how much of a help you all have been even with the distance, seeing how strong you all have been through Savanna's challenges gives us the extra nudge we need to keep pushing forward. I say when our kids are more stable in the future we should find time to meet somewhere fun for the kiddos...there seems to be lots of fun places to go in y'all's state :). How neat it would be for our children to meet somebody dealing with some similar trials. Honestly though, a good chunk of the strength we gather is from knowing we are not alone and that there are others dealing with all are such are great example for us! So thank you :)

    PJ use to see Saneto but he did nothing for him for four months....just allowed seizures to continue and talked about doing things but never acted on them. He also, for some reason, never returned phone calls. We were missing our old hospital pretty bad at that point. Finally, we decided that it was getting ridiculous and chose to make an appointment with Navatne. Within two months he has gotten PJ in for a prolonged EEG, MRI, and PET scan....I will for sure be asking about an MEG this week ...I know they brought up a FMRI but I really feel the longer we sit around with all this the worse off he is going to be. My gut hasn't been wrong yet (unfortunately) and I can't shake the feeling that something is really really not right.

    Thank you for the kind words and encouragement...It is so nice to have somebody who has been/is going through similar things, even though we have been dealing with this for about a year and a half we still feel totally new sometimes to everything.

    Thanks again,

    The Barnes family