Tuesday, April 30, 2013

Manic Monday :)

Yesterday we headed out to have P.J's FMRI (functional MRI) done. How I understood it, Basically, it allows them to see what areas are working properly by showing the blood flow and oxygen use areas of the brain are using to perform some basic tasks. P.J was sedated during the test and the actual FMRI lasted about an hour. This did give my husband and I the chance to have a coffee date in the hospital, which was nice...sadly when we have time like that we usually end up reflecting on everything going on---sometimes that leads no where good. It's hard to think of anything but what is going on when your sitting in a children's hospital surrounded by children who are dealing with more then I ever had in my lifetime and in most cases more then I ever will experience...it's heartbreaking.

Pauly came out of sedation very well, thankfully. The only hard part this time around was that now he recognizes the MRI bed....poor kid looked at me screamed and repeated "uh-uh". He use to take things so well but the older he gets the less compliant he is becoming---totally understandable though, I know I would be the same way. We are just happy that this should be the last of the tests before they go "all in".

Our next appointment is next week with his neurosurgeon and also,next week, for his bayley test through the hospital to get a better idea of where he is developmentally. Until then though, we are going to enjoy this beautiful weather up here in the northwest. A little sun shine and fresh air goes a long way!! :)

Saturday, April 20, 2013

"Hanging in There."

We received appointment dates for his FMRI and for our meeting with his neurosurgeon all of which will happen next week and the week after that.  In the meantime we are just counting down the days till his appointment dates, and trying to get by with as little extra hospital trips as possible.

Sweet little P.J is making great strides with his communication (most of the time things he babbles aren't clear at all but we know exactly what he means most the time...makes caring for him much easier) he is also trying so very hard to jump...so cute!  The Little Gym has helped him so much physically (and in many other ways) every week I see this little boy learning something new from them! Funny, his new word is "nany" for candy (of course, haha!)...if we happen to say "No" he does a wonderful thing...throws a fit like a typical two year old! :)

Recent, not so great, developments......
He is now having up to nine hard seizures a day and if what they say about his subclinicals are true, it means he has had at least eighteen all together (on his worse day). They are beginning to last longer as well, around four minutes being the longest so far...you can see him struggle to come out but just can't kick it.  His clusters, strangely, seem to have taken a break though...but I can't say that I mind, I really hate days where he has them. His break days have also disappeared...yet another sign that things are heading in a bad direction. He has begun staring off again as well, which makes me a bit sad. I had been trying to ignore it but I brought it up to my husband and he had noticed it too. He doesn't blink, his eyes dilate, he just stares blankly, unresponsive for a minute or so during these spells....we have not seen him do this since his first surgery but he commonly did this before it. Another new development, he has now begun getting very flushed randomly throughout the day....I can't help but wonder what in the world is going on now.  The redness looks almost exactly the same as it did while he was on the ketogenic diet when he got too ketotic. Maybe somebody will have some insight with this? It isn't that he is over dressed and he isn't sweating so I'm thinking maybe it has something to do with his seizures?

I worry so much for him....it just breaks my heart. We are hanging onto the hope, and trying to keep our faith strong, that things will get better soon.

Wednesday, April 10, 2013

So Here is the Game Plan....

Seizures here lately have been relentless...Grandma even got to experience one of his "Good Morning" seizures before we left for his appointment today.  At this point we were unsure of how much the people at the hospital believed us so we have been recording every seizure with our phones just in case.  Thankfully, we didn't need them as his doctor totally believed everything that was going on.  He told us that he did get some information from the PET scan and his seizure that he had before the scan itself was at the absolute perfect time.  He had just had the radioactive sugar injection about 10 minutes prior to his seizure and any activity in that 45-60 minutes after the injection can be tracked.  They found that the seizure that he had was coming further back on the right side of his brain...  The only bummer is that it is most likely going to impact his motor skills.  To us, right now it is no big deal, he CAN NOT live with these seizures....they are detrimental to his development.  They are causing the speech and cognitive delays and at this point, we feel, he can deal with the motor delay way easier then the speech and cognitive delays.  He wants so badly to communicate with others and play with others but at this point he just can't and you can see the frustration in his sweet little face.  It was so heartbreaking today, he walked up to a woman sitting in on our appointment and stood there staring at her...you could see that he wanted so bad to talk to her. He literally stood there for ten minutes just looking at her right in the face just like somebody would be doing if they were holding a conversation...made my heart ache for him!

Well onto the doctors plan of action. P.J is being scheduled for an FMRI and after that he will have an appointment with the Neurosurgeon and then will have the Grid placement done which will lead directly to the surgery.  Grid placement is similar to an EEG but they will place them directly on the brain (brain surgery part 1) he had this done the first time around but it was done on the operating table so he didn't have to sit around with them on...this time he will be monitored in the hospital for a while.  This will allow them to see exactly where the problems are and what is "good" brain and what is "bad" brain. It will also tell them what exactly they will be impacting if the area of brain is removed. The doctor said that with as often as he is seizing it should only take a couple of days as opposed to the week or sometimes more it can take (so in this case more seizures are better, yay).  After they get the information he will go straight back and have the dysplasia removed for a second time in hopes of FINALLY being able to know the real Pauly....not the highly medicated, seizing, little boy.  The guessed time frame for all this is two and half or three months till we will be on our way to recovery....I can't help but hope it happens a bit sooner...totally ready to move forward with our lives as a family....without the dysplasia!  So ready or not here we go with our fingers crossed and praying hard....onto a second brain resection!

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.