Before, During, and After..
So the first picture was taken on the day that my husband and I were both fed up and tired of "Waiting for the medication to work". He was having, what I thought to be, drop seizures (he fell hard and then started drooling, shaking, his eyes deviated to the right, he turned blue and looked like he was in so much pain....sometimes he would fall though and just go limp and drool with his eyes deviating right) every three minutes or so and we later found out he was also having sub clinical seizures (Ones that happen only in the brain and shows us no sign that he is seizing) along with the seizures we were seeing. Once in the hospital in North Dakota, after some demanding, My youngest son and I were sent to the Mayo Hospital in Rochester MN.
Once we got to the hospital they tried to stop the seizures with more emergency medications. Once they realized that none of the medication was working they placed our child into a medical coma to try and stop his brain from seizing. It never stopped but it did slow down a little bit. We were told he was still having longer spells of 17 minutes and he was kind of going in and out of the seizures ( Thought it was much better then being stuck in one constantly so I was happy he was getting a little better).
He stayed in the medical coma for three weeks or so and once his father got there they began trying to allow him to come out of the coma to prepare for his emergency brain surgery (they finally found what they thought to be the problem). He had already been fighting the medication since he had been on it for so long he had become "use" to them (or addicted as I said while I was there). He had kept trying to wake up but they would bump up his meds to put him back out. Little kids are so resilient!! I finally got to hold him and snuggle him once he was able to breath on his own and the tube was removed..I was so happy :)
Daddy was the first person to make this little boy smile! I think P.J sensed that his daddy was the rock in this situation and seemed way more at ease with him. I was preparing myself mentally for the next day and was pretty petrified at the thought of them rushing him in and graphing his brain and resecting all in one setting.
The nurses were shocked that he came around so quickly! He was VERY unsteady and VERY uncoordinated. At the time we weren't totally sure if it was brain damage from the amount and lengths of the seizures or if it was the loads of medications that he was on. At that point it was a waiting game. We washed our little ones hair and waited for him to be whisked away to the OR.
March 28, 2012
VERY Difficult walking your baby into a cold, sterile, room with as many shiny sharp objects as there were in the OR. I was so sad to leave him but knew in my heart that this was his only chance at life since his seizures had already began again from him being brought out of his long sleep.
About Five or Six hours later we were able to see him. The recovery room is crazy and I wasn't prepared to see my baby so wounded. I also wasn't prepared to see my child in a situation where he had to receive a blood transfusion! I am not sure why, but I thought it would be a little cut, and that it would be covered....I was wrong about both assumptions! I was so afraid he was going to hurt himself after the surgery, it was hard for me to touch him without flinching for him. We were warned that there would be left side weakness most likely as they had to remove more then what they thought they would and reminded us about the rehab facility there that could help if he needed after he came around so we had to wait to see what all he could do.
After his surgery, later in the day, P.J was already sitting up!!! Not just sitting up, but playing with toys! He was using his left arm just as much as his right. His whole body was a bit weakened just from laying in a bed for so long so with the surgery now we thought for sure he would be super slow at getting around, but this kid proved us, and everyone else, wrong!
He had balloons delivered from his Nanna and Papa Joe and went crazy! He was focused and banging them around like they were the best things ever!
The second day after surgery we finally had the clearance from the doctors to go to the play room to see what he would do. We were tearing up with delight as he squatted, and pushed himself to a standing position----he actually took a few steps!!!
Once the group of therapist evaluated our son they told us there were no significant signs of weakness on his left side and that we could start therapy back home. His neurosurgeon came in on the weekend with his family to see P.J and seemed so excited to see him walking! He grabbed our son's hand and walked with him down the hall to the playroom smiling and cheering on P.J. He told us we could take off and head home! We were in the hospital for three days after his operation.
The picture above is a week or so after surgery. The swelling had finally gone down and we were able to finally unpack our house from our recent move! He was still unsteady and he was not able to express himself very well with his emotions (He couldn't cry, laugh, look angry, he was pretty much straight faced all the time).
P.J a month post op! He was finally smiling more although it was still tough to get a reaction. I made faces at him until my face hurt just to get him to show me something!
The surgery was so scary, and for us we had no option. If I was given the option I would go back and do it again to save him in a heart beat, and we will most likely be doing again within the next few months. He is having them way less then before his first operation, thankfully, but is at up to four physical seizures a day and sub clinical seizures throught out the day---but since we can't see them I try not to think about them. We are now in a frenzy to try and salvage the functional parts of his brain.
P.J's, Personal, Long Term Effects From Surgery
P.J has slight weakness on the left side and drags his toes occasionally and sometimes his left foot turns in when he walks. He does trip from this from time to time. He is running, unsteadily, and still gets stone faced from time to time and during these times he shows absolutely no emotion. He also has some slight left hand weakness....nothing major or really noticeable by the untrained eye, but he favors his right hand/arm. All of these things happened after the surgery--whether or not they are from just the surgery, just the seizures,just the disorder, or a combination of them all is really unknown, although, we are told that it is "most likely" a result of the surgery. He also has a pretty big problem speaking and with his cognition. We are fairly certain this is NOT from the surgery as all of that stuff should be on the left side but rather from either the seizures, damaged brain, or from the Topamax (since this drug is known to cause speech and cognitive delays). In my opinion, I feel it is the seizures. With a bad day it seems to wipe his speech out almost completely. We should get a better idea of what is most likely causing those problems soon though.