Friday, May 31, 2013

Neurosurgery Two Week Check Up

Yesterday was a flood gate of emotions....pretty common for this house hold!  We met with neurosurgery and they were so very impressed with PJ and how well he is doing developmentally...he is really thriving right now which I can't get enough of seeing.  I actually am feeling a little bad because my other two young ones are lacking a little of my attention during the day.  Still really trying to work out some sort of balance.

They also informed us that pathology came back as cortical dysplasia  ll b, which was a relief because we were told that it was likely more then just one type in there.

  I did bring up my concern with his face starting to flush again and him twitching again (the twitching has slowed down a lot but is still happening) during nap and bed time like he did before this surgery.  I brought up that I knew the brain was healing so I was hoping it may have something to do with it.  I was quickly told that those symptoms weren't healing related but were unfortunately signs of seizures.  Deep down I knew that the flushing wasn't good. I even watched him do it a couple of times right after surgery....use to though, most of the time, (before the surgery) this flushing and twitching would lead to a full on tonic clonic I thought in the hospital he was going fall into a big episode but once he didn't and the redness faded I had hope it was nothing...I was in a bit of denial with it all..I think, even though I didn't admit it openly, I had loads of hope that this would be it even though I repeatedly said "I'm not very hopeful".

Now we are waiting for him to heal some to see about a third surgery. They told us they typically wait a bit before they go in again--not things we wanted to have brought up after we all successfully survived this second round. This dysplasia will only get worse again though if it isn't all removed, so we got to do what we have to, to give this little guy the best life we can. At this point it is being seizure free and try and reduce the ample amounts of zombifying seizure medications he is on. As of right now we begin waiting again---waiting for harsher seizures, waiting for doctors phone calls, waiting for appointments, and waiting to have our little boy be healthy, happy, and rid of cortical dysplasia. He will get through all this!

Tuesday, May 28, 2013

A Turn for the Best! :)

On the 22nd Paul woke up and surprised everyone. He decided, on his own, that he was ready to walk, nearly run, play, and begin communicating. He even said two words together consecutively! Both totally clear! Amazing! We did move to the rehab unit to ensure that things were going as well as they seemed and he blew them away.

He does have problems with his left arm and remembering it is still there and will need an orthotic for his left ankle just for outings where he will be doing lots of walking to keep him from tripping.  Really though things were not expected to be this well.  Unfortunately, PJ did have a "possible" seizure at night in the hospital.  His eyes rolled back a few times and he began lip smacking then his jaw went tight, he took a deep breath, then went back to sleep.  We were told not to worry to much as it could be the brain healing and not anything related to his disorder....can't lie though, I am worried...petrified actually, but we will see.  I have a feeling though that if he has an abnormal EEG again that they will end up graphing him to make sure he is not constantly seizing again deeper in his brain....maybe not, actually I'll word it better HOPEFULLY not...I would prefer his EEG be nice and normal and us not even need to wait to find out what they would do!   They released us from the hospital Friday afternoon and we were able to bring all our babies home.  I snapped a picture before my oldest had his swim class...which he wasn't very happy about haha!

Since being home I have noticed him still flushing a deep red color during his sleep.  I am not too sure what is causing this and will be asking the docs to see what they think....I can't help but fear that the seizures are still at it in there.  He has, however, had a HUGE reduction in his twitching in his sleep and has had a big boost in his balance overall.  Even with his bad leg he seems to be way more coordinated now then before.  His cognition still waivers a bit.  In fact, he doesn't understand if we say more then three or four words to him.  It has to be straight to the point or he just goes "uhhhhhhhh" and then walks off...which could be a result of many things...he isn't at a very cooperative age as it is! Needless to say we will be giving PJ lots of TLC to try and see how we can try and get him to a comfortable level developmentally.

Sunday, May 19, 2013

Slower to Recover..

Ugh, we have got hospital fever...blah!! Yesterday PJ started having some huge milestones hit. He walked on his own, unassisted, for about 10 feet to grab the handle of the hospital door and pull it with his left hand--this just so happened to be the door that led outside to the patio. He has been spending lots and lots of outside time in hopes of perking him up a bit (so far not much of a change). He is saying his typical words again but more clearly and alternating from one word to another without pause maintaining clarity throughout. PJ has begun giggling again also which is amazing to hear! Today he finally stopped vomiting and was able to, once again, tolerate food. Now for slower to recover parts...PJ is so very lethargic and rests most the day. He does not do anything unless we make him. He literally lays in bed and doesn't move unless it is to reach for his dad or I. His heart rate has been low today and now they are having to watch that a little closer.  They are also waiting for him to "do the do". This kid refuses to poop. We're hoping tomorrow he will poop and have more energy...I hate seeing him like this. I worry too that a third resection may be pushing him to the limits if this dysplasia is still deeper in there "hiding out". This NEVER gets easier...I truly don't think it ever will either...I will always worry about this little guy. I don't know if this is because the lack of success with the first surgery but I feel like I can't hold much faith in the thought of my son remaining seizure free, I feel horrible thinking that way..

Friday, May 17, 2013

Post Surgery Update

So we were reunited with our little man earlier then expected yesterday around 6:30 in the evening. His surgeon let us know that they took more then they had planned for but were very pleased overall with the surgery. Once they had the electrodes on the brain during the surgery (the doctors called it ECoG which they do in order to distinguish exactly what is "bad" brain and what is "good" before they resect) they found that, once again, my baby boy was constantly being disrupted by seizures. He told us it was firing off so much that within five seconds of having them on they had enough information to remove and it would have been the same outcome if the would have decided to do the IEEG (the few days of Intercranial monitoring) so thank goodness he chose not to go that route. I will say though I am totally heartbroken that this has went on for as long as it has and that these seizures have been constantly wrecking havoc inside my little baby's brain since his birth. What was so difficult with that most of the seizures he was having were not physically seen by us but was developmentally destroying and holding PJ back. How he is with us today and how he continued to make tiny steps developmentally is nothing short of a miracle. Overall though he did very well in surgery and once he came out the nurse told me he said "owieee" and she asked if his head hurt and he quickly responded with "yeah" this brought me to tears....he has never responded quickly and correctly to questions and he did with her! He is slow to move his left leg but he is moving his left arm pretty well. It will take a little bit to see how he will be as far as weakness and function go. Oh, most importantly...and encouragingly, PJ had his first ever clean EEG reading (from the ECoG) after the "bad" brain was removed...AMAZING! :)   Now we set back enjoy time with our little boy we have never really met and pray that the dysplasia was all successfully removed. Thank you to all our friends and family for your unwavering support, love, and means so very much to us!! We will update as PJ wakes up...

Thursday, May 16, 2013

Here We Go Again

A quick update for now:  
Today is the day... Right now our baby boy is in the hands of his surgery team. He was so angry going under it broke my heart! We know this is the right thing but it still doesn't really make this process much easier. He went back a little later then expected so he won't be out until pretty late tonight....his poor surgeon will be putting in quite a few extra hours today I think. More updates to come on this looooonnng day. 

Thursday, May 9, 2013

Surgery Date...

We got the call! His second resection is being scheduled for next week on the 16th. Hoping that no sickness comes around this house! If he gets sick the surgery gets pushed back.

Wednesday, May 8, 2013

Meeting P.J's New Neurosurgeon

The last couple of days have been busy for us with Pauly. We had his Bailey test yesterday and today we got the results of his test and met his neurosurgeon.

P.J was not into the testing...AT fact he got extremely upset and frustrated towards the end. At first he was pretty mellow and compliant but eventually enough was enough for him. We found out today that he is more delayed then we thought. He is roughly between a 12-16 month old level (averaging out his scores). We truly don't see him being that far behind when he is at home....we know he isn't where he should be but we had no idea he would rank so far behind. That's okay though, things can only get better, right? :)

His neurosurgeon seemed to be a wonderful, intelligent, compassionate gentleman. We were relieved to see that Pauly also approved of him, P.J does not try to interact with people if he doesn't "click" with him and P.J was more then willing to reach for things he had and listen to him.  We were told that they were not going to bother with the IEEG this time (brain graphing) as he could obviously see the remainder of the right front lobe was an issue. We are looking at only a 50% chance of him being seizure free. If they return they will schedule him for brain graphing and remove further back and if need be will consider a hemispherectomy. At this point his surgeon does not want to remove too much in one surgery anyway. We are already treading on dangerous ground where the dysplasia is. There is a chance of a shunt being permanently placed since one of the areas being removed is near a fluid pocket. The surgery could be next week or the week after....we should be finding out tomorrow. We were told it will be a seven hour procedure and be about a four day hospital stay, maybe longer depending on how much of an impact the surgery takes on his motor functions. The appointment was really a lot to take in and I feel like I should have recorded it just in case I missed something. I got the just of it though and although my wording isn't near as "medically smart sounding" as he put it that was the basics of what I gathered from our time with him. We are hoping things fall in the seizure free 50% for P.J but if it doesn't, that's just fine. Pauly is such a strong little soul and he will power through this---We all will make it through this!