EEG Spot Check Results

We got the results from PJ's spot check EEG and in the 30 ish minutes of recording he had no seizures that they could see. It unfortunately still showed abnormal on the right side.  It also showed signs of some swelling which doesn't come as such a shock to us with the surgery being done about three weeks ago.  We were told that it had improved...I had to chuckle with that being said as nearly all that side was removed so it better had improved! We have an MRI and an appointment with his neurosurgeon in a month and in the meantime we will watch and wait for seizures since with it reading abnormal we are thinking that it is most likely due to more dysplastic brain---at least until we are told otherwise anyway. I was really hoping to have them begin lowering meds but with his EEG not being clean I am not thinking that they will...who knows what will be said next month though..got to try and be a little optimistic!! :)

Two Week Post Surgery Neurosurgery Check Up

PJ had his two week check up today and his wound looks great, no concerns there. There are some concerns however with his twitches happening throughout the night more frequently, predominately on the left side from facial twitches all the way down to his toes. His right leg is now also showing random bouts of extra tone causing him to trip which is odd.  He is getting an AFO soon, for now as he heals, for his left leg and we were told that it looks as though,now, he may need one on both legs as his usage of both of his ankles seem pretty unpredictable (left more then right). He is being scheduled for an EEG to see if his motor strip is acting up any and perhaps causing some of these issues (twitching and right ankle tone).  He is also complaining of his head hurting towards the back and is unconsolable at times and these episodes stop abruptly.  They are not too concerned about this right now though as it could be a result of the recent surgery and could happen up to a month after surgery.  Even still though if his occipital (visual) lobe was/is acting up an EEG would (hopefully) pick up the abnormal waves. We are hoping his reading comes back clean but also know that if it doesn't its okay because we know there are other options to get PJ to lead a more normal life.  Blah, tests. They are so great for getting answers but such a pain for a two year old.

PJ and his "sissy" holding hands while he sleeps :)

Home 40 Hours After Surgery

The surgeon made his rounds yesterday morning and was so impressed by PJ's accomplishments that he released us home. It is so shocking the small amount of deficit he has physically compared to the large amount of improvements we already notice in other areas....now, like last time, we know to keep a close eye on things since he showed tons of signs last time that he was still seizing.  For having nearly all his right side removed he is just blowing us away!

Physically what we have noticed: He walks with a bit of a lean to the left and has still been consistently dragging his toes on his left foot. We are working hard at getting him to use his left hand but at this point he is doing a great job of forgetting about it being there. When he uses it he is able to pinch at things but it seems considerably weaker then his right hand. But we are only two day out of surgery so we know things could get a little better quickly as he heals.

Positive things we have seen: PJ is not flushing so far and his twitching during his sleep is very minimal. He has already started saying the few words he spoke before surgery and his response time has been very quick when answering "uh huh" (or nodding) or "uh uh" (or shaking his head). He is also saying thank you (more humming it then pronouncing it, but he does it consistently when somebody does something for him or we tell him to say thank you).  He has started more "baby babbles" which is a good sign of him trying to communicate more. He is also back to using two words together. We are hoping since he is doing this so soon after surgery that soon or at least eventually he might start spitting out some more words!

It is so amazing the amount of trauma a child can go through and still pull through without skipping a beat.

 This kid is our miracle.

The Day After

PJ is doing remarkably well. His surgeon came by to check on him and told us that by looking at the post op scans it doesn't look like PJ should be using his arm and leg yet he was moving around all four limbs.  Today Paul took things even further and WALKED! He is dragging his toes pretty bad but is still walking unassisted. His grip has improved a bit but is still weak with his left hand. His surgeon is not worried about the seizure PJ had since the motor strip left had quite a bit of trauma during the surgery, he seemed to kind of expect it. This does not mean we stop being on our toes....we know now that only time will tell us if this surgery did the trick or not. On another great note, he hasn't thrown up at all, which makes us happy and he is eating and drinking well. Now we wait for him to poo. We are so amazed at how well he is doing :)

Surgery Three Completed

PJ came out of surgery today like a trooper! He heard my voice and said "momma up" reaching towards my voice (his eyes were already swollen shut). They wrapped his head this time around which is kinda nice also. Sadly PJ had a seizure about two-three hours after surgery. It showed all the signs of PJ's old seizures minus the staring spell before it. The areas he has remaining on that side is his motor area and his occipital lobe.  He did get as close as he could though to his motor as he could without totally wiping him out. Unfortunately we knew that there was a decently high possibility of  more surgeries but will wait in high hopes of seeing nothing more---but also totally accepting the possibility of needing another.  we were told during this surgery once they got through to the insula(r) lobe that it appeared to be the most obviously malformed. It was all scar tissue from "burning itself out"-- it was also constantly firing off deep in there.  They also let us know finding dysplasia there like they did was very rare. Good news is PJ didn't stroke from what they could see on his scan after surgery but the vessels supplying blood to the motor area were, from how I understood it, pulled away from abnormal tissue so we are hoping they don't start "spazzing out" on him.  The deficit on his left side currently is more pronounced but we anticipate it getting a little better before we see his new baseline since healing will take a bit of time. Will be updating as PJ comes around more, thank you to all our friends and family for the support and prayers!

Round Three...

Seizures have increased to up to 20 visible episodes a day. Most of them occurring at night and during nap time....Leaving PJ, daddy, and I to be horribly sleep deprived. We have been giving midazolam almost daily and sometime twice a day with little relief. They upped his Topamax drastically to try and slow things down which has worked a little allowing us to give him a break from his midazolam.  Paul's neurosurgeon wanted to see him ASAP last week to discuss another surgery so we met up the day after I called letting them know the severity of things (so thankful they moved so quickly). He let us know upfront that this may take four or five surgeries (depending on whether or not seizures return again) to get the dysplasia as it "acts up" because  he is really wanting to try and spare as much of that right side as he can. The only lobe that will be left alone this time is his occipital lobe (vision) and maybe a part of the periatal lobe depending on whether or not it reads clean once they are in there.  The temporal, part of the periatal, and an area really deep in the brain called the insula lobe has to be remove. The insula lobe puts him in a very high risk for stroke which will essentially cause the same damage to Paul's physical abilities as a full hemispherectomy would cause but there is still that chance that he won't stroke and he will have fewer issues physically and that is what his surgeon is aiming for. We aren't afraid of any of this though because we know he is in very good hands and these seizures must be stopped so he can cognitively and verbally progress. Every day is one day closer to helping PJ. Our other two blessings are taking everything so well. They have sacrificed so very much during all this...makes me happy that they are all so young I think they don't know any different right now and don't have a clue that this isn't normal.

PJ's third surgery is scheduled for this Friday the 5th. Praying hard that my baby comes out of surgery as well as he has in the past. My only fear, with either living with seizures or surgery, is losing my baby. I hope and pray this gives my little PJ some relief from all these seizures.

And We Start Again..

 

It has been a while since I have updated...We had an overnight EEG last week that turned into a two night EEG. Sadly PJ is still seizing from the right side. He had multiple seizures the first night we were recording with one physical episode. They asked us to stay to try and get more information and information they received...PJ had his worst night, with seizures mimicking the ones he use to have before his first surgery.  It was long and stimulation set him into a hard physical seizure. Needless to say, I was a petrified mess. We were told that his seizures are remaining on the right side and, at this point, not spreading to the left. His flushing episodes are seizures and his extreme fits could be seizures or repercussions of a seizures. Right now the big bulk of his seizures are happening at bed time and nap time but abnormal waves remain steady from everywhere remaining except the occipital lobe (or at least from what the EEG reads anyway). Right now there is a possibility that he is seizing more deeply in the remaining right side making it also undetectable on regular EEG like before.  Right now we are at a place where a hemispherectomy is Paul's best shot at living a normal seizure free life....We are very aware that chipping away at that side doesn't seem to be doing the trick and we don't want to put him through more surgeries then necessary and our gut is saying this is PJ's cure. God has a big plan for this sweet little boy. He has taught us so much already and I pray that PJ and all of us can look back at these couple years and smile knowing how far we have come. We should be hearing back from the hospital this week for further appointments and are really hoping that things roll as quickly as they did last time. We are also, possibly, going to be taking away some more medications sometime soon...but we will see how that all turns out.  It just breaks our hearts seeing PJ suffer.

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 episode....so 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!

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.

 

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..

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 prayers....it means so very much to us!! We will update as PJ wakes up...

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. 

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.

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 ALL...in 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!

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!! :)